{"paper_id":"ba310279-8332-4305-8892-c02b15d63bc8","body_text":"Abstract\n!\nIntroduction: Endometriosis is a chronic disease\nwith differing clinical presentations. Treatment\nstrategies depend mainly on clinical presentation\nand patient lifestyle. In women newly diagnosed\nwith endometriosis, it is often difficult to under-\nstand the pathophysiologic origin, the potential\nindividual impairment due to disease and the dif-\nferent treatment options. Compliance with the\nselected treatment is therefore often not optimal.\nMaterial and Methods: In a descriptive study,\ndata of 51 women with endometriosis (mean age\n36.2 years ± 11.3) were analyzed according to the\npredominant clinical presentation: asymptomatic\ndisease, disease with typical symptoms, ovarian\ncysts or infertility.\nResults: More than 50 % of patients ascribed a\ntherapeutic benefit to surgical intervention or en-\ndocrine treatment, especially women in the sub-\ngroup with dysmenorrhea who received com-\nbined treatment. It should be noted that in the\ngroup of women facing infertility, more than half\nstated that they could not decide on the value of\ndiagnostic and therapeutic reproductive medi-\ncine. Nevertheless, more than half of the women\nin this group became pregnant within two years\nafter the initial diagnosis.\nDiscussion: When deciding on the best treatment\nstrategy for endometriosis, it is important to take\naccount of potential pain and infertility. Women ʼs\nperception of endometriosis will vary depending\non their symptoms, the time of diagnosis and\ntheir lifestyle. Offering continuous information\non clinical aspects and manifestations of the dis-\nease may improve treatment outcomes. Personal-\nized counseling is an essential part of the clinical\nmanagement of the disease.\nZusammenfassung\n!\nEinleitung: Endometriose ist eine chronische Er-\nkrankung mit unterschiedlichem klinischem Er-\nscheinungsbild. Die Behandlungsoptionen sind\nabhängig von Symptomatik und Lebenssituation\nder Patientin. Frauen haben Schwierigkeiten, die\nGesamtheit der pathophysiologischen Vorgänge,\ndie verschiedenen Therapieoptionen und die\nmögliche Beeinträchtigung der Gesundheit bei\nDiagnosestellung zu verstehen. Daher ist häufig\ndie Compliance bez. der vorgeschlagenen Thera-\npie nicht optimal.\nMaterial und Methode: In einer deskriptiven Stu-\ndie wurden Daten von 51 Frauen mit Endometri-\nose (mittleres Alter 36,2 ± 11,3 Jahre) zur subjek-\ntiven Beurteilung der Erkrankung in Abhängigkeit\ndes führenden klinischen Befunds (Erkrankung\nasymptomatisch, mit typischen Symptomen, En-\ndometriosezysten der Ovarien oder Infertilität)\nanalysiert.\nErgebnisse: Mehr als die Hälfte der Patientinnen\nbeurteilten die operative und endokrine Therapie\nals erfolgreich, besonders in der Gruppe der Frau-\nen mit Schmerzen als vorrangigem Symptom. Bei\nInfertilität gaben unerwartet mehr als die Hälfte\nder Frauen an, nichts über den Nutzen von diag-\nnostischen und therapeutischen Maßnahmen\nder Reproduktionsmedizin zu wissen. Immerhin\nwurden mehr als 50 % der Frauen mit Infertilität\nim Laufe der nächsten 2 Jahre nach Diagnosestel-\nlung schwanger.\nDiskussion: Die Beurteilung und Einschätzung\nder Erkrankung durch die Patientinnen ist abhän-\ngig von Symptomen, dem Zeitpunkt der Diagnose\nund der individuellen Lebenssituation. Besonders\nSchmerzen und Aspekte der ungewollten Kinder-\nlosigkeit sollten bei Therapieentscheidungen mit-\nberücksichtigt werden. Eine frühzeitige individu-\nelle und intensivierte Aufklärung vermögen bei\nbetroffenen Frauen die Compliance bez. der The-\nrapie sowie das Verständnis der Erkrankung posi-\nEndometriosis – A Chameleon: Patientsʼ Perception of Clinical Symptoms,\nTreatment Strategies and Their Impact on Symptoms\nEndometriose ein Chamäleon – subjektive Beurteilung von Patientinnen bezüglich der klinischen Symptomatik,\nBehandlungsstrategien und deren Einfluss auf die Beschwerdesymptomatik\nAuthors P. Wimberger1, N. Grübling 1,A .R i e h n1, M. Furch 1, J. Klengel 2, M. Goeckenjan 1\nAffiliations 1 Gynecology and Obstetrics, Technische Universität Dresden, Dresden\n2 Praxis für Gynäkologie und Geburtshilfe, Dresden\nKey words\nl\" endometriosis\nl\" infertility\nl\" sterility\nl\" endocrine treatment\nl\" adenomyosis uteri interna\nl\" compliance\nSchlüsselwörter\nl\" Endometriose\nl\" Infertilität\nl\" Sterilität\nl\" endokrine Therapie\nl\" Adenomyosis uteri interna\nl\" Compliance\nreceived 20. 7. 2014\nrevised 23. 8. 2014\naccepted 24. 8. 2014\nBibliography\nDOI http://dx.doi.org/\n10.1055/s-0034-1383168\nGeburtsh Frauenheilk 2014; 74:\n940–946 © Georg Thieme\nVerlag KG Stuttgart · New York ·\nISSN 0016‑5751\nCorrespondence\nProf. Pauline Wimberger,\nPhD, MD\nTechnische Universität Dresden\nGynecology and Obstetrics\nFetscherstraße 74\n01307 Dresden\npauline.wimberger@\nuniklinikum-dresden.de\n940\nWimberger P et al. Endometriosis – A Chameleon … Geburtsh Frauenheilk 2014; 74: 940 –946\nGebFra Science\n\n\nIntroduction\n!\nOn average, 8 – 15 % of women aged 15 – 50 years suffer from the\ntypical symptoms and sequelae of endometriosis such as dys-\nmenorrhea, dyspareunia, abdominal and pelvic pain, and infertil-\nity [1]. The pathophysiology of this disease and its multiple clini-\ncal presentations is still not completely clear. Studies have shown\nincreasing evidence for endometriosis being caused by altered\nimmune responses [2]. Despite the high incidence of endome-\ntriosis, its diagnosis is still delayed (on average by 10.4 years)\n[3]. Diagnostic and therapeutic options for this disease have been\nrecently standardized in national [4] and international consensus\nstatements [5].\nNevertheless, there are only a few studies on women ʼs own per-\nception of the disease and the long-term risks of endometriosis,\nsuch as infertility or chronic pain. These aspects were investi-\ngated in an Australian study which used focus groups and re-\ncruited 61 women suffering from endometriosis. The study\nshowed that patients were mainly concerned with the lack of\nsupport and their own daily struggle; patients reported being\nstressed by the personal losses caused by the disease which af-\nfected their family, partnership and career [6]. Women found\ndealing with endometriosis difficult and time-consuming. After\nhaving received sufficient information about the disease, they\nwanted to be able to decide on the management of their disease\nand quality of life for themselves. Another analysis by Cox et al.\nshowed that women preferred to take decisions on treatment op-\ntions such as endoscopic surgery themselves [7].\nEndometriosis is a chronic disease which is associated with fre-\nquent pain, repeated surgeries, hormone treatment and long-\nterm sequelae such as infertility; it can therefore have an impact\non all aspects of a womanʼs life. A retrospective analysis of health-\nrelated distress and interference with life activities emphasized\nthe strong impact of frequent pain [8]. Dyspareunia affects the\nwomenʼs partnership, sexual life and fertility, resulting in a re-\nduced quality of life [9]. In a qualitative study of 30 women in\nGreat Britain it was shown that 86 % of women experienced dys-\npareunia, leading the majority of them to avoid sexual inter-\ncourse. Only the desire to become pregnant could motivate these\nwomen to endure the pain caused by the disease and be sexually\nactive [9].\nThe aim of this study was to evaluate patients ʼ perception of en-\ndometriosis with regard to treatment strategies and changes in\nsymptoms due to treatment.\nMaterial and Methods\n!\nPatient recruitment\n221 patients with endometriosis were recruited at the Depart-\nment of Gynecology and Obstetrics of the Technical University\nof Dresden, Germany. Women diagnosed with endometriosis or\nadenomyosis between January 2000 and December 2005, irre-\nspective of the actual cause of hospitalization and surgery, were\nincluded in this study. Inclusion criteria were macroscopically\nand histologically confirmed endometriosis or adenomyosis. Age\nand pre- or postmenopausal status were not inclusion or exclu-\nsion parameters. The women were contacted by mail and were\nasked to return a completed questionnaire. Written consent was\nobtained from all patients.\nQuestionnaire\nQuestionnaires on symptoms and on pain resulting from endo-\nmetriosis have recently been developed and are increasingly\nbeing used in diagnosis and to control the efficacy of treatment\n(e.g. endometriosis health profile [10]). Short versions are avail-\nable as German translations (http://www.endometriose-liga.eu/\nfiles/anamnesebogen.pdf).\nAs the aim of this study was to evaluate the perception of treat-\nment in four clinical subgroups, a new questionnaire was devel-\noped. Due to the concept of the study, there was no initial survey\nof the health status of participating women prior to treatment.\nThe quantitative questionnaire technique was believed to be ap-\npropriate to obtain an insight into individual perspectives of the\ndisease, including subjective assessment of diagnosis, complaints,\nand therapeutic interventions as well as changes in lifestyle due\nto endometriosis.\nThe authors developed a questionnaire and a symptom checklist\nto collect data. The questionnaire was designed to evaluate the\npatientʼs medical history and included diagnostic procedures\nand symptoms prior to diagnosis and at the time of answering\nthe questionnaire. In addition, initial and ongoing surgical and\nmedical treatment (including frequency, duration and type of\ntreatment) as well as changes in symptoms and fertility and pa-\ntientʼs perception of disease and treatment were analyzed. Wom-\nen in the infertility subgroup were asked about their wish to be-\ncome pregnant and about what they knew about infertility, diag-\nnostic procedures and infertility treatment. Women who became\npregnant were asked about the time interval till becoming preg-\nnant, the birth, weeks of gestation at delivery, and their percep-\ntion of the effects of treatment. The questionnaire was filled out\nretrospectively at a mean of 2.7 years after diagnosis. Medical da-\nta obtained from clinical records were included in the analysis.\nStatistical analysis\nClinical data of the study population were analyzed. The study\npopulation was divided into 4 subgroups depending on the pre-\ndominant clinical and diagnostic manifestations (infertility, inci-\ndental findings, ovarian cysts and pain or symptoms related to\ntiv zu beeinflussen und sind essenzieller Bestandteil des kli-\nnischen Managements bei Endometriose.\nn=2 2 1consecutive patients with a documented diagnosis\nof endometriosis/adenomyosis were contacted per mail\nn=5 1 patients included in study after returning questionnaire\nn=6 4 w o m e nc o u l dn o t\nbe contacted (envelopes\nreturned unopened) n = 106women not\ninterested in taking part\nin study\nFig. 1 Recruitment of the study population (recruited and contacted\nwomen, drop-outs).\n941\nWimberger P et al. Endometriosis – A Chameleon … Geburtsh Frauenheilk 2014; 74: 940 –946\nOriginal Article\n\n\nmenstruation and sexual intercourse). This subgrouping was per-\nformed prior to analysis of the questionnaire based on the coding\nof the diagnoses (endometriosis and adenomyosis uteri interna)\nand confirmed by medical chart review. In cases with overlap-\nping symptoms, the main clinical presentation was chosen as\nthe basis for categorization.\nThe statistical significance of differences between studied sub-\ngroups was assessed using Pearsonʼs χ\n2-Test and the standardized\nresidual method. Differences in median values were compared by\nnonparametric Mann-Whitney test. Significance was defined as\np ≤ 0.05.\nResults\n!\nDescription of study population\nThe rate of return for the questionnaires was 51/157 (32.5 %)\n(l\" Fig. 1). In spite of the relatively low response rate, the propor-\ntion of returned questionnaires for the subgroups was compara-\nble to the distribution of the subgroups in the whole study pop-\nulation ( l\n\" Table 1 ). When we compared the subgroups, women\nin the subgroups ‘ infertility’ and ‘ incidental findings/asympto-\nmatic’ differed significantly with regard to age. The higher me-\ndian age was due to the study ʼs recruitment strategy of including\nwomen of all ages with histological findings of endometriosis\nand adenomyosis. The oldest patient who answered the ques-\ntionnaire was 66 years old and was in the group of incidental\nfindings. The indication for vaginal hysterectomy was inconti-\nnence, and adenomyosis uteri was confirmed histologically. The\nage of the oldest women with a histological diagnosis of endome-\ntriosis, but not adenomyosis uteri interna, was 48.\nThe completed questionnaires and the clinical data of 51 women\nwere analyzed in this study. The following clinical parameters\nwere assessed using the clinical charts of the study population:\ndiagnosis, complaints, treatments received, medical history, de-\nliveries, abortions, ectopic gravidity, organ manifestations, stage\nof endometriosis according to the revised classification for endo-\nmetriosis of the American Society for Reproductive Medicine\n(rASRM-score) [10], histology, surgical intervention, and further\nrecommended treatment. The clinical data of the study popula-\ntion based on medical records are shown in l\n\" Table 2.\nDifferences in symptoms and diagnostic methods\nin different subgroups\nThe questionnaires were analyzed for the four clinical subgroups.\nAlthough the numbers in some groups were small, significant dif-\nferences were observed ( l\n\" Table 3 ). Allocation to clinical sub-\ngroups corresponded to self-reported symptoms. Dysmenorrhea,\nthe most typical symptom of endometriosis, was reported for al-\nmost 80 % of the patients in the symptomatic group, for one in\nevery three women with infertility, and for one in every two\nwomen with ovarian endometriosis. 3/9 women without typical\nsymptoms reported pelvic pain but no dysmenorrhea.\nThe patients were questioned about the reasons their gynecolo-\ngist had suspected and diagnosed endometriosis. There were no\nstatistical differences between subgroups. Vaginal ultrasound led\nto the diagnosis of endometriosis or adenomyosis in a higher per-\ncentage of the group with ovarian endometriosis and in the\nasymptomatic group, but the difference was not statistically sig-\nnificant. In the infertility subgroup, the most common diagnostic\nmethod was laparoscopy.\nDifferences in endocrine treatment\nbetween different subgroups\nThe incidence of endocrine treatment for endometriosis was\ncomparable for all groups but was especially high in the infertility\ngroup. A tendency, which was not statistically significant, was\nfound for women in the infertility group to be treated with go-\nnadotropin-releasing hormone analogues (GnRH agonists). The\nuse of GnRH agonists across all groups was quite high at 58.8 %,\nbecause the study was conducted before progestin-only medica-\ntion for patients with endometriosis was introduced in Germany\nin 2010.\nWomen reported relief of symptoms after endocrine treatment in\nthe infertility and the typical symptom groups (52.6 and 33.3 % of\nwomen, respectively). Significantly fewer women in the asymp-\nTable 1 Analysis of response rate and median age in different subgroups of patients with endometriosis (* p-value < 0.05).\nMain clinical\npresentation\nAll patients\nn = 221 (%)\nMedian age\n(years, STD, range)\nStudy population\nn=5 1( % )\nMedian age\n(years, STD, range)\np-value\nInfertility 81 (36.7 %) 30.2 ± 5.26 (17 –41)* 19 (37.3 %) 32.2 ± 5.0 (23 –41)* 0.034\nIncidental findings 38 (17.2 %) 44.6 ± 15.0 (16 –77)* 9 (17.6 %) 47.4 ± 11.4 (31 –66)* 0.013\nOvarian cysts 42 (19.0 %) 37.5 ± 13.2 (16 –72) 9 (17.6 %) 31.7 ± 10.9 (16 –49) 0.431\nDysmenorrhea/\nhypermenorrhea\n60 (27.1 %) 36.1 ± 9.4 (17 –53) 14 (27.4 %) 37.2 ± 5.7 (29 –48) 0.644\nTotal 221 35.6 ± 11.3 (16 –77) 51 36.2 ± 9.6 (16 –66) 0.432\nTable 2 Characteristics of the study population.\nCharacteristics Study population\n(n = 51)\nAverage age in years (range) 36.2 (16 –66)\nMarital status\n\" married/partnership (%) 39 (76.5)\n\" single (%) 12 (23.5)\nMean parity (range) 1.3 (0 –5)\n\" miscarriage (%) 5 (9.8)\n\" ectopic pregnancy 2 (3.9)\nClinical grading of endometriosis [rASRM score] (%)\n\" rASRM I 17 (33.3)\n\" rASRM II 7 (13.7)\n\" rASRM III 12 (23.5)\n\" rASRM IV 3 (5.9)\nAdenomyosis 13 (25.5)\nDocumented proposed further treatment (%)\n\" endocrine treatment with gonadotropin\nreleasing hormone\n26 (50.1)\n\" endocrine treatment with progestins 16 (31.4)\n\" hysterectomy 2 (3.9)\n\" assisted reproductive medicine 4 (7.8)\n942\nWimberger P et al. Endometriosis – A Chameleon … Geburtsh Frauenheilk 2014; 74: 940 –946\nGebFra Science\n\n\nTable 3 Self-reporting questionnaire (n = 51 women); statistical analysis using standardized residuals (values in italics) (* significant difference, p < 0.05).\nInfertility\n(n = 19)\nIncidental\nfindings (n = 9)\nOvarian cyst\n(n = 9)\nClinical symptoms\n(n = 14)\np-value\nComplaints before\ntreatment\n\" pelvic pain 10 (52.6)\n0.1\n3 (33.3)\n−0.7\n4 (44.4)\n−0.3\n9 (64.3)\n0.7\n0.515\n\" dysmenorrhea 7 (36.8)\n−0.5\n0 (0.0)*\n−2\n5 (55.6)\n0.5\n11(78.8)\n1.9\n0.002\n\" hypermenorrhea 9 (47.4)\n−0.1\n0 (0.0)\n−2.1\n3 (33.3)\n−0.7\n13 (92.9)*\n2.3\n0.0001\n\" premenstrual\nsymptoms\n5 (26.3)\n−0.5\n1 (11.1)\n−1.2\n2 (22.2)\n−0.6\n9 (64.3)*\n2\n0.030\nMedian rASRM score (1–4) 2.1\n0.8\n2\n0.9\n2.1\n0.4\n1.5\n0.3\n0.403\nAdenomyosis (n) 2\n−0.1\n6\n−1.3\n1\n−0.9\n4\n0.1\n0.110\nDiagnostic\nassessment\n\" typical symptoms 3 (15.8)\n−0.4\n2 (22.2)\n0.2\n0 (0.0)\n−1.3\n5 (35.7)\n1.4\n0.194\n\" gynecological\nexamination\n4 (21.1)\n0.4\n1 (11.1)\n−0.5\n1 (11.1)\n−0.5\n3 (21.4)\n0.3\n0.845\n\" vaginal ultrasound 6 (31.6)\n−0.1\n4 (44.4)\n0.6\n4 (44.4)\n0.6\n3 (21.4)\n−0.8\n0.589\n\" laparoscopy 16 (84.2)\n1.4\n1 (11.1)*\n−1.9\n3 (33.3)\n−1\n10 (71.4)\n0.6\n0.001\nTherapeutic\ninterventions\n\" laparoscopy 18 (94.7)\n0.9\n2 (22.2)\n−1.9\n7 (77.8)\n0\n12 (85.7)\n0.4\n0.0001\n\" laparotomy 5 (26.3)\n0.9\n0 (0.0)\n−1.3\n4 (44.4)\n1.9\n0 (0.0)\n−1.6\n0.016\n\" hysteroscopy 0 (0.0)\n−1.1\n1 (11.1)\n0.6\n0 (0.0)\n−0.7\n2 (14.3)\n1.3\n0.419\n\" hysterectomy 5 (26.3)\n−0.2\n3 (33.3)\n0.2\n1 (11.1)\n−1\n6 (42.9)\n0.9\n0.158\n\" oral contraception 5 (26.3)\n−0.1\n0 (0.0)\n−1.6\n4 (44.4)\n1\n5 (35.7)\n0.6\n0.108\n\" GnRH agonists 15 (78.9)\n1.1\n3 (33.3)\n−1\n5 (55.6)\n−0.1\n7 (50.0)\n−0.4\n0.541\nComplaints after ini-\ntiation of treatment\n\" pelvic pain 6 (31.6)\n0.7\n2 (22.2)\n−0.1\n0 (0.0)\n−1.5\n4 (28.6)\n0.4\n0.301\n\" dysmenorrhea 1 (5.3)\n−0.6\n1 (11.1)\n0.1\n1 (11.1)\n0.1\n2 (14.3)\n0.5\n0.850\n\" hypermenorrhea 1 (5.3)\n−0.4\n1 (11.1)\n0.4\n0 (0.0)\n−0.8\n4 (28.6)\n0.9\n0.598\n\" premenstrual\nsymptoms\n1 (5.3)\n−0.4\n1 (11.1)\n0.4\n0 (0.0)\n−0.8\n2 (14.3)\n0.9\n0.598\nSubjective changes\ndue to surgery\n\" no change 6 (31.6)\n0.2\n3 (33.3)\n0.2\n1 (11.1)\n−1\n5 (35.7)\n0.4\n0.131\n\" improvement 13 (68.4)\n0.3\n6 (66.7)\n0.1\n6 (66.7)\n0.1\n7 (50.0)\n−0.6\n\" symptoms worse 0 (0.0)\n−1.2\n0 (0.0)\n−0.8\n0 (0.0)\n1.5\n2 (14.3)\n0.9\nSubjective changes\nwith medication\n\" no change 8 (42.1)\n−1\n7 (77.8)\n0.7\n4 (44.4)\n−0.6\n11 (78.6)\n1\n0.113\n\" improvement 10 (52.6)\n1.7\n1 (11.1)\n−1.1\n3 (33.3)\n0.1\n2 (14.3)\n−0.3\n\" symptoms worse 1 (5.3)\n−0.6\n1 (11.1)\n0.1\n2 (22.2)\n1.2\n1 (7.1)\n−0.3\nPerception of\ndiagnosis/treatment\n\" surgery is beneficial 15 (78.9) 7 (77.8) 7 (77.8) 8 (57.1)\n\" endocrine treatment\nis beneficial\n12 (63.2) 1 (11.1)* 5 (55.5) 8 (57.1)\n\" diagnosis of infertility –\nI donʼt know\n9 (47.4) 0 0 2 (14.3) 0.511\nInfertility-specific\ndiagnosis/treatment\n\" diagnostic\nsperm count\n13 (68.4)\n\" insemination 5 (26.3)\n\" in-vitro fertilization 4 (21.1)\n\" intracytoplasmatic\nsperm injection\n3 (15.8)\n943\nWimberger P et al. Endometriosis – A Chameleon … Geburtsh Frauenheilk 2014; 74: 940 –946\nOriginal Article\n\n\ntomatic group with predominantly confirmed adenomyosis\n(6 of 9 women) considered endocrine treatment to be beneficial\n(l\n\" Table 4). The reported symptoms (dysmenorrhea, heavy vagi-\nnal bleeding and premenstrual symptoms) particularly improved\nin the symptomatic group. No statistical differences were found\nbetween the 4 subgroups after initiation of treatment, although\nclinical differences were statistically significant prior to treat-\nment. 11/14 patients with symptoms did not recall changes due\nto medication.\nDifferences in surgical treatment\nbetween different subgroups\nUnexpectedly, 5/19 women with infertility reported that hyster-\nectomy had been proposed to them to treat endometriosis in\nspite of their initial and documented wish to have a child. Two\nwomen suffering from pain and hypermenorrhea received initial\ntreatment with hysterectomy after unsuccessful infertility treat-\nment. Surgery was performed in these women because of severe\ndysmenorrhea and their strong desire for a definitive treatment\nof endometriosis. One 33-year-old woman underwent multiple\nunsuccessful IVF treatments and finally adopted a child. Because\nof the severe impairment of her quality of life she underwent\nhysterectomy and bilateral oophorectomy. Another 3 women\nunderwent hysterectomy within 2 years after diagnosis.\nIn all subgroups, more than 50 % of the patients stated that their\nsymptoms improved post surgery. Two women stated that symp-\ntoms worsened after surgery, one in the group with ovarian cysts\nand one in the group with clinical symptoms; both women had\nno additional hormone treatment.\nDifferences in perception of treatment options\nbetween different subgroups\nThe questionnaire included the subjective perception of possible\ntreatment effects. The women were asked to complete multiple\nchoice questions. More than 75 % women reported a perceived ef-\nfect of surgery. Only in the symptomatic group did fewer women\nconsider surgery to be a beneficial treatment for endometriosis\n(8/14). Three women stated that only endocrine treatment was\nbeneficial and another 3 believed that no treatment was benefi-\ncial. Of the 9 women who believed that endocrine treatment is\nnot beneficial, 2 were facing infertility and 4 were in the sub-\ngroup with asymptomatic endometriosis. Only one woman with\ndysmenorrhea stated that endocrine treatment was not benefi-\ncial; she also suffered from infertility. 23 women had confirmed\ndysmenorrhea prior to treatment. l\n\" Table 4 shows the percep-\ntion of endocrine treatment and surgery for these 23 women.\nKnowledge of patients about infertility\nand the success of intervention\n12 of the 19 women with endometriosis and infertility recalled\nundergoing functional testing of the tubes; 7 reported having at-\ntempted several methods of artificial reproductive medicine. In-\nterestingly, 9 of 19 women facing infertility responded to the\nquestion about what they thought of the diagnosis and treatment\nof infertility with “I donʼtk n o w” (47.4 %).\n11/19 women in the infertility group reported a pregnancy after\nreceiving a diagnosis of endometriosis. The time to pregnancy\nwas less than 2 years in 9 of these women. Four of the 11 women\nbecame pregnant with artificial reproduction methods. Three\nwomen who underwent in-vitro fertilization or intracytoplas-\nmatic sperm injection did not achieve a pregnancy by the time\nthis survey was completed.\nDiscussion\n!\nEndometriosis is a chronic disease with many clinical manifesta-\ntions. The subjective perception of the disease was assessed by a\nquestionnaire-based survey which compared three symptomatic\nsubgroups with endometriosis and an asymptomatic group of\nwomen who had an incidental diagnosis of endometriosis.\nThe women in the infertility group were significantly younger\nthan women in the other groups. The asymptomatic group had a\nhigher age at the first diagnosis of endometriosis/adenomyosis\nuteri interna. In spite of the pre-categorization into 4 subgroups\nthere were no significant differences in rASRM score, although\nthe rASRM score tended to be lower in the asymptomatic group.\nThis finding corresponds to the literature where a reversed score\nhas been proposed by the American Society of Reproductive\nMedicine as a classification model for the severity of endometrio-\nsis; however, it still correlates only poorly with pain and sterility\n[11, 12]. There were no cases of severe, deep, infiltrating endome-\ntriosis involving the bladder and colorectum in our study.\nInfertility is correlated with endometriosis and vice versa,\nalthough the pathophysiological mechanisms for this correlation\nare still not clear [13]. Clinical records revealed that endometri-\notic cysts were found in more than 50 % of the patients in the in-\nfertility group, a significantly higher percentage than in the\nasymptomatic group. It is still not clear whether endometriotic\ncysts have a direct negative influence on fertility or whether they\nonly lead to impaired ovarian reserve due to surgery. The indica-\ntion for cyst excision must therefore be evaluated carefully for\neach patient [14].\nThe medical approach to treat endometriosis consists of different\nhormone treatment options. The capacity of oral contraceptives,\nlocal or systemic progestins, or GnRH agonists to reduce endo-\nmetriosis-related pain is well proven. The high proportion of\nwomen treated with GnRH agonists in this study can be ex-\nplained by the absence of an approved progestagen for endome-\ntriosis in the study period.\nEven though clinical symptoms differed significantly in the pre-\nselected subgroups prior to treatment, the evaluation of patients ʼ\nperception of the disease and treatment only showed a few sig-\nnificant differences between groups after initiation of treatment.\nSignificant differences were only found for self-reported symp-\ntoms, especially dysmenorrhea and other menstrual symptoms.\nInterestingly, after initiation of treatment with surgery and addi-\ntional proposed medical treatment, the groups no longer differed\nwith regard to symptoms. No other statistical differences were\nfound overall with regard to the effects of surgery and medical\ntreatment, but a significantly lower belief in the beneficial effect\nof endocrine treatment was reported for the asymptomatic\nTable 4 Effect of treatment: statements of women with self-reported symp-\ntoms of dysmenorrhea prior to treatment (n = 19; 4 out of 23 patients did not\nrespond).\nSurgical\ntreatment\nbeneficial\nSurgical\ntreatment NOT\nbeneficial\nNo\ncomment\nEndocrine treatment\nbeneficial\n12 2 1\nEndocrine treatment\nNOT beneficial\n1\nNo comment 3\n944\nWimberger P et al. Endometriosis – A Chameleon … Geburtsh Frauenheilk 2014; 74: 940 –946\nGebFra Science\n\n\ngroup. This can be easily attributed to a lack of any subjective\nbenefit from medication. In contrast, a high percentage (12/19)\nof women with prior dysmenorrhea reported that combined en-\ndocrine and surgical treatment was beneficial.\n10/19 of women with infertility reported an improvement of\nsymptoms with endocrine treatment. These women were in fa-\nvor of hormone treatment, even though medication prolonged\nthe time to pregnancy. Nevertheless, 50 % of women with infertil-\nity reported becoming pregnant within 2 years after medical\ntreatment. The perceived positive effect of hormone treatment\nand subsequent pregnancy led to the high retrospective assess-\nment of endocrine treatment as “beneficial”. This positive assess-\nment of hormone treatment (oral contraceptives, progestin only\nor GnRH agonists) in the infertility group may be interpreted as a\ngood understanding of the pathophysiological condition of endo-\nmetriosis. Women in this group may have been influenced by the\nreduction of pain and the reduced risk of recurrence of endome-\ntriosis, which allowed women to postpone their wish to become\npregnant.\nThe high proportion of infertile women treated with GnRH ana-\nlogues despite having only mild endometriosis reflects the usual\nprocedure at the time of the survey. Based on strong evidence\n(recommendation grade A), current guidelines do not recom-\nmend the prescription of GnRH agonists to infertile women with\nminimal or mild endometriosis [5].\nWomen with a documented diagnosis of endometriosis and/or\nadenomyosis were included in this analysis. Age was not defined\nas an inclusion or an exclusion criterion; a small subgroup of\nwomen was therefore above 50 years of age and was postmeno-\npausal (n = 5). Four of these women were in the subgroup with\nincidental findings, and all of them had adenomyosis. Although\nthe number of older women is too small to draw any conclusions,\nit is important to underline the fact that endometriosis/adeno-\nmyosis may also be present in postmenopausal women, as noted\nrecently in a retrospective analysis [15].\nIt is worth mentioning hysterectomy as a treatment option for\nendometriosis, even for infertility patients; hysterectomy was\ninitially used in 2/19 of women and subsequently in a further 3\nwomen. These women were aged 33 – 43 years and had under-\ngone many years of infertility treatment. Hysterectomy was the\nfinal treatment option for endometriosis in spite of the women ʼs\ninfertility.\nTraditionally, hysterectomy and oophorectomy have been con-\nsidered an effective treatment option, especially in women with\nendometriosis involving the uterus [16]. Hysterectomy without\noophorectomy is sufficient for adenomyosis uteri interna, but\nnot for endometriosis in general [17], even if a woman, possibly\ndue to a misunderstanding of the pathophysiology of endome-\ntriosis, asks for this intervention. If the woman suffers from se-\nvere symptoms, other treatment options are ineffective and fer-\ntility is no longer desired, the indication for hysterectomy with\nor without oophorectomy in women with endometriosis should\nbe made based on an individual risk-benefit evaluation and a de-\ncision-making consensus [18, 19].\nSeven out of 19 infertility patients used an artificial reproduction\nmethod, and 50 % of all women with infertility became pregnant\nwithin 2 years after the first diagnosis as a result. Half of the\nwomen with infertility reported that they could not decide on\nthe value of diagnostic and therapeutic infertility treatments\n(“Id on o tk n o w”). This finding shows the importance of adequate\neducation about the special nature of endometriosis. The impor-\ntance of a biopsychosocial approach to pain was recently empha-\nsized by Siedentopf et al. [20]. Adapted counseling techniques are\nneeded for doctors and patients to understand the nature of en-\ndometriosis as a complex chameleonic disease and the effect of\ntreatment.\nNevertheless, the experience with certified endometriosis cen-\nters in Germany shows that complex treatment options for pa-\ntients should be discussed individually in specialized interdisci-\nplinary boards [21].\nA limitation of the study was the small number of participating\nwomen. The quantitative questionnaire was sent by mail to 221\nwomen; 64 of them could not be reached and the envelope was\nreturned, possibly because of a change of address. All women\nwere only contacted by mail and could opt not to answer by not\nreturning the questionnaire to the clinic or returning an uncom-\npleted questionnaire. This led to an unexpectedly low return rate\nof 32.5 %, although the usual return rate of about 40 – 50 % had\nbeen expected. Fortunately, mean age and proportional sub-\ngrouping into the four clinical groups were comparable with the\ninitially intended study sample.\nThe self-reporting of symptoms, the treatment and the changes\nassociated with treatment (mean interval between the first treat-\nment and completion of the questionnaire was about 2 – 3 years)\nmay have led to distorted and possibly false memories. This study\ncan therefore not serve as a study on compliance with proposed\ntreatment. Nevertheless, future studies on this aspect of endome-\ntriosis are needed.\nThe design of this study with a newly developed questionnaire\nwas only appropriate for quantitative research done in a small\nstudy sample. Qualitative research to clarify the perception of en-\ndometriosis is needed, using structured interview techniques or\na focus group design.\nModern information technologies allow women to obtain medi-\ncal information and exchange medical information via the inter-\nnet. This means of communication in patient communities has\nbeen described in detail for endometriosis-support groups in\nCanada [22]. Modern media and social networks should be used\nfor research and as a way to reach a broad range of women with\nendometriosis.\nConclusion\n!\nIt is difficult to understand what endometriosis means to women\nsuffering from this disease, as it can have many different clinical\nmanifestations. This questionnaire-based survey analyzed four\nclinical subgroups and showed that women with endometriosis\ndemonstrate different responses to symptoms and treatment,\neven if these differences were not statistically significant. It is ob-\nvious that symptoms and perceptions of each woman may vary,\nleading to the conclusion that personalized and intensive coun-\nseling is extremely important.\nConflict of Interest\n!\nNone.\n945\nWimberger P et al. Endometriosis – A Chameleon … Geburtsh Frauenheilk 2014; 74: 940 –946\nOriginal Article\n\n\nReferences\n1 Schweppe KW. Differentialdiagnose und Behandlungsstrategien bei\nEndometriose: Was tun – wann? Journal für Fertilität und Reproduk-\ntion 2003; 13: 8 – 12\n2 Slabe N, Meden-Vrtovec H, Verdenik I et al. Cytotoxic T-cells in peripher-\nal blood in women with endometriosis. Geburtsh Frauenheilk 2013;\n73: 1042– 1048\n3 Hudelist G, Fritzer N, Thomas A et al. Diagnostic delay for endometriosis\nin Austria and Germany: causes and possible consequences. Hum Re-\nprod 2012; 27: 3412 – 3416\n4 Ulrich U, Buchweitz O, Greb R et al. Interdisciplinary S2k guidelines for\nthe diagnosis and treatment of endometriosis: short version - AWMF\nRegistry No. 015-045, August 2013. Geburtsh Frauenheilk 2013; 73:\n890– 898\n5 Johnson NP, Hummelshoj L; World Endometriosis Society Montpellier\nConsortium. Consensus on current management of endometriosis.\nHum Reprod 2013; 28: 1552 – 1568\n6 Cox H, Henderson L, Andersen N et al. Focus group study of endometrio-\nsis: struggle, loss and the medical merry-go-round. Int J Nurs Pract\n2003; 9: 2 – 9\n7 Cox H, Henderson L, Wood R et al. Learning to take charge: womenʼse x -\nperiences of living with endometriosis. Complement Ther Nurs Mid-\nwifery 2003; 9: 62 – 68\n8 Mathias SD, Kuppermann M, Liberman R et al. Chronic pelvic pain:\nprevalence, health-related quality of life and economic correlates. Obst\nGynecol 1996; 87: 321 – 327\n9 Denny E, Mann CH. Endometriosis-associated dyspareunia: the impact\non womenʼs lives. J Fam Plann Reprod Health Care 2007; 33: 189 – 193\n10 Jones G, Jenkinson C, Kennedy S. Evaluating the responsiveness of the\nendometriosis health profile questionnaire: the EHP ‑30. Qual Life Res\n2004; 13: 705 – 713\n11 Haas D, Shebl O, Shamiyeh A et al. The rASRM score and the Enzian clas-\nsification for endometriosis: their strengths and weaknesses. Acta Ob-\nstet Gyn Scand 2013; 92: 3 – 7\n12 Ulrich U, Hucke J, Schweppe K-W. Empfehlung zur Diagnostik und The-\nrapie der Endometriose. Zentralbl Gynakol 2005; 127: 338 – 345\n13 Vercellini P, Trespidi L, De Giorgi O et al. Endometriosis and pelvic pain:\nrelation to disease stage and localization. Fertil Steril 1996; 65: 299 –\n304\n14 Rimbach S, Ulrich U, Schweppe KW. Surgical therapy of endometriosis:\nchallenges and controversies. Geburtsh Frauenheilk 2013; 73: 918 –\n923\n15 de Ziegler D, Borghese B, Chapron C. Endometriosis and infertility:\npathophysiology and management. Lancet 2010; 376: 730 – 738\n16 Haas D, Chvatal R, Reichert B et al. Endometriosis: a premenopausal\ndisease? Age pattern in 42,079 patients with endometriosis. Arch Gy-\nnecol Obstet 2012; 286: 667 – 670\n17 Kissler S, Gaetje R, Siebenzehnruebl E et al. Neues in Diagnostik und The-\nrapie der Endometriose. Zentralbl Gynakol 2004; 126: 299 – 302\n18 Halis G, Kopf A, Mechsner S et al. Schmerztherapeutische Optionen bei\nEndometriose. Dtsch Arztebl 2006; 103: A-1146/B ‑968/C‑933\n19 Lefebre G, Allaire C, Jeffrey J et al.; Clinical Practice Gynaecology Commit-\ntee; Executive Committee and Council, Society of Obstetricians and Gy-\nnaecologists of Canada. SOGC clinical guidelines. Hysterectomy.\nJ Obstet Gynaecol Can 2002; 24: 37 – 61\n20 Siedentopf F, Hausteiner-Wiehle C. S3 Guideline “Management of pa-\ntients with non-specific, functional and somatoform physical com-\nplaints”– What is important for gynaecological practice? Geburtsh\nFrauenheilk 2013; 73: 224 – 226\n21 Ebert AD, Ulrich U, Keckstein J et al. Implementation of certified endo-\nmetriosis centers: 5-year experience in German-speaking Europe. Gyn\nObstet Invest 2013; 76: 4 – 9\n22 Whelan E. ‘ No one agrees except for those of us who have it ’ : endome-\ntriosis patients as an epistemological community. Sociol Health Illn\n2007; 29: 957 – 982\n946\nWimberger P et al. Endometriosis – A Chameleon … Geburtsh Frauenheilk 2014; 74: 940 –946\nGebFra Science","source_license":"public-domain-us","license_restricted":false}