{"paper_id":"c38c2ea6-91d0-46ff-890e-d71cfece9574","body_text":"Abstract\nEndometriosis is a common, but difficult to diagnose and manage, condition for women of reproductive \nage. Published studies have shown that healthcare providers and women comprehend endometriosis \nfrom different perspectives. To identify the notions behind the discrepancies between the descriptions \nof women with endometriosis and healthcare professionals, we explored the reported impacts and \nmanifestations described for endometriosis. Two branches regarding the impact of endometriosis on \nwomen were categorized as follows: disability and isolation, as well as pain and intimacy. In contrast, \nthe features of the symptoms were characterized as protean and diffusing symptoms that were simplified \nto obtain reductive diagnosis, and anchor versus relief. To promote healthcare for women with \nendometriosis, researchers must embrace a broader and more holistic approach to the investigation of \nemic knowledge of women with endometriosis.\nProtean Symptoms and Reductive Diagnosis\nPublication History:\nReceived: January 19, 2016\nAccepted: March 07, 2016\nPublished: March 09, 2016\nKeywords:\nEndometriosis, Symptoms, Pain, \nNarrative\nReview Article Open Access\nIntroduction\nEndometriosis is a common, but difficult to diagnose and manage, \ncondition for womenof reproductive age [1]. Given that the physical \nmanifestations of endometriosis cause women to suffer from potential \nimpacts on fertility, intimate relationships, and social psychological \ndistress [1-3],endometriosis has been described to cause disruptions \nin daily life [1,4]. \nOral or written descriptions about an illness and the effect of an \nillness are termed illness narratives [5]. People describe an illness \nwithin the frame of particular types of illnesses and the typical \nforms of their appearance but also with a practical or instrumental \nattitude regarding the illness [6]. Written narratives about illnesses \nand the effects on the lives of affected people do not merely reflect \nthe experience of symptoms and suffering [7], but also contributes to \nunderstand narrators’ knowledge and ideas about illness.\nPublished studies have shown significant gaps between the \ndescriptions of the symptoms of endometriosis provided by women \nand gynaecologists[3,8,9].To identify the notions behind the \ndiscrepancies between the descriptions of women with endometriosis \nand healthcare professionals, we review the published literatures \nconcerning the effects and symptoms related to endometriosis, to \nprovide insights regarding the current discourses on endometriosis as \nwell as a deeper reflection on the clinical practice.\n \nWomen with Endometriosis\nConsequent to fluctuations in hormones, the endometrial tissue \noutside of the uterine cavity swells, bleeds and releases inflammatory \nsubstances into the surrounding tissue of different parts of the body. \nThe symptoms of endometriosis are diverse and include heavy \nmenstrual bleeding, pain, fatigue, malaise, abdomen distention, \ndiarrhoea, alginuresis, dyspareunia, insomnia and depression, which \nare experienced monthly [1,10,11]. Treatments for endometriosis, \nincluding analgesics, gonadotropin-releasing hormone agonist \n(GnRH), oral contraceptives, laparoscopy and radical surgery, cannot \ncure the illness and instead focus on symptom relief [1]. The symptoms \nand treatment of endometriosis have been revealed to cause impacts \non women’s daily life.\nStudies have shown that the experience of living with endometriosis \ncan be represented by narratives from women diagnosed with this \ncondition. Qualitative studies investigating endometriosis have\n*Corresponding Author: Dr. Hui-Chu Chiang, Assistant Professor, Graduate \nInstitute of Integration of Traditional Chinese Medicine with Western Nursing, \nNational Taipei University of Nursing and Health Sciences, Taiwan; E-mail: \nhuichu@ntunhs.edu.tw \nCitation: Wu SM, Lee HL, Chiang HC (2016) Protean Symptoms and Reductive \nDiagnosis. Int J Gynecol Clin Pract 3: 114. doi:  http://dx.doi.org/10.15344/2394-\n4986/2016/114\nCopyright: © 2016 Wu et al. This is an open-access article distributed under the \nterms of the Creative Commons Attribution License, which permits unrestricted \nuse, distribution, and reproduction in any medium, provided the original author \nand source are credited.\nInternational Journal of\nGynecology & Clinical Practices\nShu-Mei Wu1, Hui-Ling Lee1, Hui-Chu Chiang2*\n1Department of Nursing, Chang Gung University of Science and Technology, Taiwan\n2Graduate Institute of Integration of Traditional Chinese Medicine with Western Nursing, National Taipei University of Nursing and Health \nSciences, Taiwan\nInt J Gynecol Clin Pract                                                                                                                                                                                          IJGCP , an open access journal                                                                                                                                          \nISSN: 2394-4986                                                                                                                                                                                                       Volume 3. 2016. 114                                           \n                                    Wu et al., Int J Gynecol Clin Pract 2016, 3: 114\n                                    http://dx.doi.org/10.15344/2394-4986/2016/114\nrevealed that the two branches of the illness experience are1) disability \nand isolation and 2) pain and intimacy.\nDisability and Isolation\nTo examine the psychosocial impact of endometriosis, Culley et \nal. reviewed 42 peer-reviewed, English-language journal articles, \nwhich included 23 quantitative, 16 qualitative and 3 mixed-methods \nstudies. These selected studies have demonstrated that endometriosis \nharmfully and substantively impairs women’s health and daily life. The \nmajority of women in those studies reported noticeable impairments \nin quality of life and everyday activities due to endometriosis-related \nas well as coexisting symptoms. These impairments may persist over \ntime. The long-term effects of treatments are unknown, and there is \nno cure. A decrease in energy and vitality has been mentioned [1]. \nA recent qualitative study focusing on descriptions of the“occurrence \nand diagnosis” of endometriosis by 6 gynaecologists and 12 patients \nalso demonstrated that the women experienced different feelings that \ninterfere with their wellbeing and lives, and sometimes were disabling \n[8].\nFourquet, Gao, Zavala, Orengo, Abac, Ruiz, Laboy and Flores \nnoted that the severe and chronic pain has a negative impact on work \nperformance, on family relationships and self-esteem, and on all \naspects of life [10]. Since biomedicine can not improve the intense \npain, many women are unable to handle daily affairs of life and daily \nactivities during their menstrual period, especially when their pain \nis most severe. These disruptions lead to feelings of fatigue, sadness, \nfear, hopelessness, powerlessness, alienation and depression [3, \n12]. The feelings are accompanied by a condition that is chronic, of \nan uncertain etiology, or fail to improve [12]. Hence, women with \nendometriosis have experienced physical limitations in conducting \ndaily tasks such as domestic tasks, as well as disturbances in their \nsocial life resulting in isolation [13].\n\nInt J Gynecol Clin Pract                                                                                                                                                                                          IJGCP , an open access journal                                                                                                                                          \nISSN: 2394-4986                                                                                                                                                                                                       Volume 3. 2016. 114                                           \nCitation: Wu SM, Lee HL, Chiang HC (2016) Protean Symptoms and Reductive Diagnosis. Int J Gynecol Clin Pract 3: 114. doi:  http://dx.doi.org/10.15344/2394-\n4986/2016/114\n       Page 2 of 4\nknitting needle [11]. Emad used an online public space for women with \nendometriosis to write daily and voice their experiences concerning \ntheir illness. Among the words which women used to describe their \npain, terms such as the alienating intractability of the pain, rein \nhabiting pain, engulfing pain; the pain occurs before and during \nmenstrual periods, during and after sexual activity, often during and \nafter bowel movements [13]. Pain also causes various problems in \ndifferent parts of the body, such as abdominal pain, headache, lower \nback pain, anal pain, mastalgia and lower limb pain [3].\nDenny [15] also described the experiences of women with \nendometriosis and found that during occurrence of the worst pain, the \nwomen were vomiting or dizzy, and some women experienced severe \npain around the time of ovulation that was almost constant [16]. \nThe severity of the pain fluctuates in a wavelike manner according \nto menstruation or treatment and is considered to impair function. \nPain increases in severity and duration over the years for most of \nwomen with endometriosis, at times almost disappearing in response \nto treatment but usually re-occurring with renewed intensity [11].\nThe symptoms of endometriosis are always chronic and an intense \npresence in everyday reality. Pain and other symptoms are consistently \nand repeatedly expressed by affected women. Sometimes the women \ncould not verbalize the unpredictable and equivocal sensation, but it \nwas a reality in their bodies. \nSimplified and reductive diagnosis\nFor some of the women with endometriosis, painful symptoms \nstarted during adolescence (11-19 years old) [10]. Some women \nvisited with five or more physicians before being diagnosed [10]. \nUltrasonography, CA125, family history, and laparoscopy are usually \nemployed to determine the diagnosis. Family history has been \nconsidered as a key factor leading to the diagnosis of endometriosis \nby the physician [3]. However, laparoscopy remains the gold standard \nfor the diagnosis of endometriosis. \nAlthough various symptoms occurred concomitantly, the symptoms \nwere not integrated into any pattern but rather were considered to \nbe different problems for many years [11]. Pain has been described \nas a crucial and destructive feature of endometriosis. Pain has been \ndocumented according to different characteristics and impacts \nvarious parts of body, according to the physiology of pain [18]. \nHealth professionals usually ask women to describe the intensity of \ntheir pain based on the assessment tools used in western medicine, \nsuch as a pain scale of 1–10, but they rarely consider the quality \nand temporality of the pain [11,13,16]. The symptoms and signs \ncorresponded to a specific body part or function, e.g., the pelvis, \nbladder, bowel, menstruation, intercourse, and fertility, among others \n[1,4,9]. Conventional treatments only provided temporary palliation \nfor months or a few years [1,3]. Health professionals have seldom \nconsidered the complaints related to recurrence and the accumulation \nof pain [11,13]. Some physicians have recognized periodic symptoms \nas typical manifestations of normal menstruation [3,9].\nThe clinical reasoning for differentiating the manifestations of \nendometriosis is centered upon a specific biomedical model which \nbreak human’s body into fragments.This model assumes that the \npain, a symptom of endometriosis, can be reliably quantifiedusing \none-dimensional tools and can be reduced into pieces and eliminated \npiece by piece. However, chronic pain requires a multidimensional \nqualitative assessment and holistic intervention [19]. A lack of \nSymptoms of endometriosis\nWomen with endometriosis experience incapacitating pain and \ndyspareunia, which negatively affects their sex lives and intimate \nrelationships [1, 10]. Pelvic pain associated with a lack of sexual \ndesire, and impaired sexual function has been reported by women \n[14]. A number of articles report that women with dyspareunia avoid \nor limit sexual intercourse or endure intercourse due to a desire for \npregnancy, maintaining a normal life and closeness with a partner [1, \n3, 15]. All of these result in feelings of inadequacy and guilt, and they \nalso have a negative impact on intimacy, that contributes, in some \ncases, to relationship breakdown [1]. Some women experience both \ndyspareunia and infertility, causing them to feel like they have lost \ntheir female role [3]. However, some women and their spouse become \na unity to struggle and seek resources together [15].\nQualitative studies have reported that women with endometriosis \nare reluctant to discuss their intercourse pain with healthcare \nprofessionals, or anyone, and healthcare professionals do not question \nwomen about sexuality [1, 4, 13]. Emad investigated women’s sexuality \nand found that several women felt free to discuss the painful sex in an \nonline discussion, but this issue was seldom discussed in medical care \n[13]. Taken together, the sexual issue is seldom discussed by either \nphysicians or women, but it is an important factor affecting intimate \nrelationships [16].\nPain and Intimacy\nMost of the women participating in the studies were symptomatic; \n72% reported having more than 8 endometriosis-related or coexisting \nsymptoms [10]. Dysmenorrhea, incapacitating pain, and intercourse \npain were the most common symptoms [10]. A ignoring and neglecting \nof women’s illness has been reported which cause women with \nendometriosis to experience a range of problems without adequate \nsupport [4]. A systematic review and integration of the findings of \nqualitative research indicated that the symptom descriptions provided \nby physicians were less severe than those described by the women \n[8]. Cox, Henderson, Andersen, Cagliarini and Ski [4] designed \nfive focus groups to explore the informational need of women with \nendometriosis. They found that the worst experiences described by \nthese women were their encounters with health professionals, and the \ntrivialization and dismissal on their complains. Riazi, Tehranian, Ziaei, \nMohammadi, Hajizadeh and Montazeri [3] explored the perception \nand experiences of patients and physicians regarding the occurrence \nand diagnosis of endometriosis. They reported that some women are \nmisdiagnosed with recurrent pelvic infections or chronic infections, \nand are treated for these diagnoses for many years. To provide insights \nregarding current discourses on the symptoms of endometriosis, the \nfeatures of the reported manifestations are described below.\nProtean and diffusing symptoms\nQualitative studies have shown that women describe their \nexperiences with endometriosis based on the sensations in their \nbody [3,9,11,17]. Pain is the most common complain of women \nwith endometriosis. The majority of the narratives provided by \nwomen surround the nature of the pain, such as the severity, quality, \ntemporality, location, and impacts. The pain is described as crippling, \ndisabling, insides coming out of my body, lower back, on the rack, \nconstant ache, legs as lumps of iron, not often free of it, worse during \nmenstruation, a gnawing pain that keeps awake, and sitting on a \n\nInt J Gynecol Clin Pract                                                                                                                                                                                          IJGCP , an open access journal                                                                                                                                          \nISSN: 2394-4986                                                                                                                                                                                                       Volume 3. 2016. 114                                           \nCitation: Wu SM, Lee HL, Chiang HC (2016) Protean Symptoms and Reductive Diagnosis. Int J Gynecol Clin Pract 3: 114. doi:  http://dx.doi.org/10.15344/2394-\n4986/2016/114\n       Page 3 of 4\nBecause the majority of women with endometriosis present various \nsymptoms concurrently, researchers should consider the holistic \nimpact of a group of symptoms rather than a specific problem. Some \nresearchers have mentioned that lifestyle changes and alternative \ntherapies are helpful to relieve suffering. Few studies have focused \non the relationships between symptoms and complementary and \nalternative medicine (CAM). Given the impact of endometriosis, \nfurther researches should consider the common compositions of \nsymptoms and the effects of CAM.\nCompeting Interests\n \nThe authors declare that they have no competing interests.\n \nAuthors’ Contributions\nStudy conception, design and coordination: HCC, HLL, and SMW; \nperformed literature search, selection, final review of results and \nfindings, wrote the manuscript: HCC and SMW; revise the manuscript: \nHCC. All authors read and approved the final manuscript.\nReferences\n \n1. Culley L, Law C, Hudson N, Denny E, Mitchell H, et al. (2013) The social \nand psychological impact of endometriosis on women's lives: a critical \nnarrative review. Hum Reprod Update 19: 625-639.\n2. Oehmke F, Weyand J, Hackethal A, Konrad L, Omwandho C, et al. (2009) \nImpact of endometriosis on quality of life: a pilot study. Gynecol Endocrinol \n25: 722-725.\n3. Riazi H, Tehranian N, Ziaei S, Mohammadi E, Hajizadeh E, et al. (2014) \nPatients' and physicians' descriptions of occurrence and diagnosis of \nendometriosis: a qualitative study from Iran. BMC Womens Health 14: 103.\n4. Cox H, Henderson L, Andersen N, Cagliarini G, Ski C (2003) Focus group \nstudy of endometriosis: struggle, loss and the medical merry-go-round. Int \nJ Nurs Pract 9: 2-9.\n5. Hydén L-C (2007) Illness Narrative. Cambridge: Blackwell.\n6. Hydén L-C (1997) Illness and narrative. Sociol Health Ill 19: 48-69.\n7. Kleinman A (1988) The illness narratives: Suffering, healing, and the human \ncondition. Basic books. \n8. Toye F, Seers K, Barker K (2014) A meta-ethnography of patients' \nexperiences of chronic pelvic pain: struggling to construct chronic pelvic \npain as 'real'. J Adv Nurs 70: 2713-2727.\n9. Fauconnier A, Staraci S, Huchon C, Roman H, Panel P, et al. (2013) \nComparison of patient- and physician-based descriptions of symptoms of \nendometriosis: a qualitative study. Hum Reprod 28: 2686-2694.\n10. Fourquet J, Gao X, Zavala D, Orengo JC, Abac S, et al. (2010) Patients' \nreport on how endometriosis affects health, work, and daily life. Fertil Steril \n93: 2424-2428.\n11. Huntington A, Gilmour JA (2005) A life shaped by pain: women and \nendometriosis. J Clin Nurs 14: 1124-1132.\n12. Seear K (2009) The etiquette of endometriosis: stigmatisation, menstrual \nconcealment and the diagnostic delay. Soc Sci Med 69: 1220-1227.\n13. Emad MC (2006) At WITSENDO: Communal embodiment through \nstorytelling in women's experiences with endometriosis. Women's Studies \nInternational Forum 29: 197-207. \n14. Di Donato N, Seracchioli R (2014) How to evaluate adenomyosis in patients \naffected by endometriosis? Minim Invasive Surg 2014: 507230.\n15. Lin SL, Hsia PH, Lee CL, Sheu SJ (2000) The influence of ednometriosis \non female marital life. New Taipei J Nurs 4: 23-25.\n16. Denny E (2004) Women's experience of endometriosis. J Adv Nurs 46: \n641-648.\nconcern regarding the nature of pain can result in a delayed diagnosis \nand overlook thewomen in difficulty [4].\nAnchor and Relief\nDiagnostic delay is a common experience for women with \nendometriosis. The diagnostic process typically takes 3-10 years, and \nwomen with endometriosis endure cruel symptoms for years without \nbeing diagnosed [1,10,11].The main causes of the delayed diagnosis \nare as follows: analgesic and hormonal formulations complicate the \nmanifestation of endometriosisduring early stages of disease [3]; a \nlack of endometriosis awareness [1, 9]; and the complaints of women \nbeing attributed to a psychosomatic disorder or being normalized [8, \n9]. \nAfter the diagnosis was made, treatment only relieves symptoms for \na period of time, and is not helpful for some women who eventually \nundergo multiple laparoscopies [4]. Some women seek help from \nalternative medicine [20] and attempt to change their activity and \ndietary habits to control their symptoms [11]. However, women and \nprofessionals both are engaged in the search for a reliable diagnostic \nindicator [3]. Receiving a definite diagnosis of endometriosis has been \ndefined as a critical stage of a women’s illness trajectory [11].\nA diagnosis of endometriosis provides women with the name of \na physiologic disorder, which results in access to both biomedical \nmanagements and to the knowledge offered by groups of women with \nthe same diagnosis. It also frees patients from the stigma associated \nwith having a disability or a psychosomatic disorder [1, 3]. Thus, the \ndiagnosis of endometriosis provides an anchor for the long-term \nillness and relief from psychosocial suffering.\nConclusions and Suggestions\nThere are no abnormalities in the appearance of women with \nendometriosis, but they suffer from their condition. Under the impact \nof protean symptoms, women experience considerable disability in \nperforming daily life tasks, going to social activities and maintaining \nintimate relationships. In published articles, the individual illness \nexperience and clinicians’ efforts in the diagnostic process all are \npresented in the context of western medicine. However, there is a \nsignificant discrepancy between the descriptions of endometriosis \nprovided by affected women compared with the descriptions \nprovided by gynecologists. The main feature of this gap is that women \ndescribe endometriosis as a chronic, complicated, and disabling \ncondition, but primary healthcare practitioners diagnose and treat \neach symptom as capable of being located, cured and present as an \nindependentlyoccurring problem.\n \nPublished studies have shown that healthcare providers and women \ncomprehend endometriosis from different perspectives [3, 9]. By \nenduring a chronic, mysterious pain with an unknown cause for a \nlong time, women develop their knowledge of endometriosis based on \nthe sensations in their body, information from others and interactions \nwith physicians. Conversely, primary healthcare professionals, e.g., \nphysicians and nurses, learn the schemas and techniques to approach \nwomen from textbooks [11, 20]. To promote healthcare for women \nwith endometriosis, researchers need to regard the women as experts \non endometriosis, and embrace a broader and more holistic approach \nto investigate women’s descriptions of their symptoms. Women’s \nemic knowledge of their body on endometriosis can provide a valid \nsupplement for the healthcare of women with endometriosis.\n\nInt J Gynecol Clin Pract                                                                                                                                                                                          IJGCP , an open access journal                                                                                                                                          \nISSN: 2394-4986                                                                                                                                                                                                       Volume 3. 2016. 114                                           \nCitation: Spinelli GP , Miele E, Lo Russo G, Rossi B, Tomao S (2016) A Case Report of a Pregnant Gene Carrier of Spinal Muscular Atrophy. Int J Gynecol Clin \nPract 3: 113. doi:  http://dx.doi.org/10.15344/2394-4986/2016/113\n17. Markovic M, Manderson L, Warren N (2008) Endurance and contest: \nwomen's narratives of endometriosis. Health (London) 12: 349-367.\n18. Hudspith MJ, Siddall PJ, Munglani R. (2006) Physiology of pain. In: \nHemmings H, Hopkins M (Ed) Foundations of Anesthesia, Mosby Elsevier, \nPhiladelphia 267-285. \n19. Breivik H, Borchgrevink PC, Allen SM, Rosseland LA, Romundstad L, et al. \n(2008) Assessment of pain. Br J Anaesth 101: 17-24.\n20. Koutroulis G (1990) The orifice revisited: women in gynaecological texts. \nCommunity Health Stud 14: 73-84.\n     Page 4 of 4","source_license":"CC0","license_restricted":false}