{"paper_id":"fa3422bc-1121-4717-851d-7e50bd0610a7","body_text":"R E S E A R C H A R T I C L E Open Access\nSelf-management strategies amongst\nAustralian women with endometriosis: a\nnational online survey\nMike Armour 1* , Justin Sinclair 1, K. Jane Chalmers 2 and Caroline A. Smith 1\nAbstract\nBackground: Endometriosis has a significant negative impact on the lives of women, and current medical treatments\noften do not give sufficient pain relief or have intolerable side effects for many women. The majority of women with\nprimary dysmenorrhea use self-management strategies (including self-care techniques or lifestyle choices) to help\nmanage period related symptoms, but little is known about self-management in women with endometriosis. The aim\nof this survey was to determine the prevalence of use, safety, and self-rated effectiveness of common forms of self-\nmanagement.\nMethods: A cross-sectional online survey was distributed v ia social media using endometriosis support and\nadvocacy groups in Australia between October and December 2017. Women were eligible to answer the\nsurvey if they were 18 –45, lived in Australia, and had a confirmed diagnosis of endometriosis. Survey\nquestions covered the types of self-management used, improvements in symptoms or reduction in\nmedication, and safety.\nResults: Four hundred and eighty-four valid responses were received. Self-management strategies, consisting\nof self-care or lifestyle choices, were very commo n( 7 6 % )a m o n g s tw o m e nw i t he n d o m e t r i o s i s .T h em o s t\ncommon forms used were heat (70%), rest (68%), and meditation or breathing exercises (47%). Cannabis, heat,\nhemp/CBD oil, and dietary changes were the most highly rated in terms of self-reported effectiveness in pain\nreduction (with mean effectiveness of 7.6, 6.52, 6.33, and 6.39, respectively, on a 10-point scale). Physical\ninterventions such as yoga/Pilates, stretching, and exer cise were rated as being less effective. Adverse events\nwere common, especially with using alcohol (53.8%) and exercise (34.2%).\nConclusions: Self-management was very commonly used b y women with endometriosis and form an\nimportant part of self-management. Women using cannabis reported the highest self-rated effectiveness.\nWomen with endometriosis have unique needs compared to women with primary dysmenorrhea, and\ntherefore any self-management strategies, especially those that are physical in nature, need to be considered\nin light of the potential for ‘flare ups ’.\nKeywords: Self-management, Self-care, Endome triosis, Exercise, Heat, Cannabis\n* Correspondence: m.armour@westernsydney.edu.au\n1NICM Health Research Institute, Western Sydney University, Building 5,\nCampbelltown Campus, Locked Bag 1797, Penrith, Sydney, NSW 2751,\nAustralia\nFull list of author information is available at the end of the article\n© The Author(s). 2019 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0\nInternational License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and\nreproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to\nthe Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver\n(http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.\nArmour et al. BMC Complementary and Alternative Medicine           (2019) 19:17 \nhttps://doi.org/10.1186/s12906-019-2431-x\n\nBackground\nChronic pelvic pain is pain in the pelvis of greater than\n6 months duration that is severe enough to cause func-\ntional disability or require medical intervention [ 1].\nWorldwide prevalence rates range between 5.7 and\n26.6% [ 2]. Endometriosis is the presence of endometrial\ntissue outside the uterine cavity and is the most com-\nmon cause of chronic pelvic pain [ 3] with 24 to 40% of\nwomen with chronic pelvic pain diagnosed with endo-\nmetriosis [ 4, 5]. A recent cohort study of Australian\nwomen aged 34 –39 years had a prevalence of confirmed\nendometriosis of 3.7% [ 6]. Endometriosis related chronic\npelvic pain includes a variety of pain symptoms includ-\ning dysmenorrhea (period pain), dyspareunia (pain dur-\ning sexual intercourse), dyschezia (pain on bowel\nmotions), and dysuria (pain on urination). In addition to\nsevere pelvic pain [ 4], endometriosis reduces quality of\nlife and increases absenteeism at work or school [ 7].\nEndometriosis impacts women ’s health and wellbeing,\nincluding social activities [ 7], mental and emotional\nhealth [ 8], work and finances [ 7], and sexual relation-\nships [ 9], and has been shown to reduce physical quality\nof life similar to that of cancer patients [ 7].\nCurrent non-surgical treatments such as non-steroidal\nanti-inflammatories, oral contraceptive pills, and hormo-\nnal treatments have limited effectiveness [ 10] and the\nside effect profile is bothersome, with discontinuation\nrates of between 25 and 50% [ 11]. Because of this, it is\nlikely that women will use self-care or lifestyle interven-\ntions as part of their self-management strategies, to\nmanage either some of their symptoms and/or some of\nthe side effects from the medications, either over the\ncounter or prescribed, used to manage their endometri-\nosis. Use of self-management strategies are incredibly\ncommon in women with dysmenorrhea [ 12, 13]. Women\nin Australia with symptoms of endometriosis do use\ncomplementary therapies [ 6], and there is evidence of ef-\nfectiveness of several of these self-management therapies\nor lifestyle interventions in managing endometriosis\nsymptoms, including dietary changes [ 14] and yoga [ 15].\nEvidence from other ongoing participant centric re-\nsearch such as ‘Citizen Endo ’ [16] suggests that women\nare using other methods such as cannabis and alcohol to\nhelp manage their pain. There is preliminary evidence\nthat the endocannabinoid system can play an important\nrole in managing endometriosis pain [ 17], and therefore\nwomen may be self-medicating with cannabis products\nto reduce dependence on opioid based pain relief. If\nwomen in the community are using self-management\nand finding it effective this will help direct future re-\nsearch efforts into both studying effectiveness and in-\ncreasing awareness about effective self-management.\nThe aim of this survey was to determine the preva-\nlence of use, safety, and self-rated effectiveness of\ncommon forms of self-management in women with\nendometriosis.\nMethods\nAn online questionnaire was developed by the research\nteam in conjunction with 19 women with endometriosis\nand hosted on the Qualtrics platform (Qualtrics Ltd).\nSelf-management was defined as physical or psychological\ntechniques that women could administer or perform\nthemselves or lifestyle interventions (such as dietary\nchanges, alcohol or cannabis usage) that were undertaken\nspecifically for the management of endometriosis symp-\ntoms. An initial list was compiled from endometriosis sup-\nport online discussions forums and those that had been\nmentioned as part of the Citizen Endo project [ 16]. This\nlist was then presented and discussed during two 90-min\nfocus groups that were run in Sydney, Australia in July\n2017. Focus groups included 19 women aged 21 –45 with\nEndometriosis. The self-management strategies that\nwomen in the focus group had used themselves or that\nthey thought were commonly used in the endometriosis\ncommunity were included in the questionnaire. Broad cat-\negories (e.g. exercise) were adopted in the questionnaire\ndue to the large number of self-management interventions\nreported by women and to reduce participant burden. All\nmeasures were self-reported and required recall over the\npast 6 months. The questionnaire collected demographics,\nuse of self-management techniques in the previous 6\nmonths, reasons for non-usage of self-management, type\nand frequency of self-management used, adverse events,\nself-rated effectiveness and any reduction in endometriosis\nrelated medication usage. The Pelvic Pain Impact Ques-\ntionnaire (PPIQ) was included to assess the severity of\npelvic pain in the sample [ 18]. Five young Australian\nwomen (aged 20 –27) piloted the survey prior to publica-\ntion, and minor amendments to wording to improve clar-\nity were made.\nThe survey took approximately 15 –20 min to complete.\nFeatures were enabled within Qualtrics that prevented\nmultiple completions from either a single IP address or\nthe same computer. A full copy of the survey can be found\nin Additional file 1. This article provides an overall sum-\nmary and comparison of all the surveyed self-management\nstrategies. In depth analysis, including costing, on the\nhighest rated forms of self-management will be published\nseparately.\nWomen were eligible to participate in the survey if\nthey were aged 18 –45, currently living in Australia, and\nhad a diagnosis of endometriosis, confirmed by a lapar-\noscopy within the last 5 years.\nRecruitment was conducted via a direct link to the\nsurvey and an invitation to participate distributed via the\nsocial media platforms (Facebook, Twitter, and Insta-\ngram) of Endometriosis Australia and EndoActive, the\nArmour et al. BMC Complementary and Alternative Medicine           (2019) 19:17 Page 2 of 8\n\ntwo Endometriosis advocacy and advice groups in\nAustralia with the most followers on social media. The\ntotal combined reach of these patient advocacy organisa-\ntions on social media is just over 33,000 followers. Each\norganisation made two social media posts regarding the\nsurvey, the first post in October 2017, and the second\npost 3 –5 weeks after the first. The survey link was active\nfrom October 2017 to December 2017, for a total of 6\nweeks. Data collection was closed once there had been\nno new responses for 10 days. Data was analysed using\nSPSS v24 (IBM Corporation). Descriptive statistics were\npresented as means and standard deviations for continu-\nous data or number and percentages for categorical data.\nInferential statistics for between group comparisons\nwere performed using a one-way ANOVA. Statistical sig-\nnificance was set at p < 0.05. Missing data was not re-\nplaced. Free text responses on the details of adverse\nevents were imported and then categorized using an\nExcel spreadsheet (Excel 2016, Microsoft Corporation).\nAdverse events were broadly categorized based on the\nfree text responses; comments using language such as\ntired, or exhausted were categorized as fatigue, while\nsleepiness or hard to stay awake were categorized as\ndrowsiness. Where women used the term ‘flare-up’ it\nwas kept as its own category as this language is often\nused to describe an increase in not only pain but all\nendometriosis symptoms. Where ‘flare-up’ was not used,\nbut pain increases were described, responses were cate-\ngorized based on where the pain was located (if men-\ntioned). Adverse event categories were classed as\n‘common’ if more than 25% of women reported them.\nThis survey was approved by the Western Sydney Uni-\nversity Human Research Ethics Committee, approval\nnumber H12394, approved 23rd October 2017.\nResults\nFive hundred and ninety women completed the survey.\nNinety-six of the responses were incomplete (less than\n25% of the survey complete) and ten responses were ex-\ncluded as they either did not live in Australia or were\noutside the age range. A total of 484 responses were\nsuitable for inclusion in the analysis and were used as\nthe denominator for analysis. Table 1 outlines the demo-\ngraphic characteristics of the participants.\nUse of self-management\nThe most commonly used forms of self-management\nwere heat (70%), rest (68%), and meditation or breathing\nexercises (47%). For those women who did not use\nself-management (Table 2) the most common reasons\nfor their non-use was that they did not have enough in-\nformation to make a decision (36%) and the time com-\nmitment (28%) or cost (28%) involved.\nEffectiveness of self-management\nWomen’s self-reported effectiveness (based on a 0 –10\nscore, with 0 being ineffective and 10 being ex-\ntremely effective) for each self-management interven-\ntion (see T able 3) showed that cannabis (7.6 ± 2.0),\nheat (6.5 ± 1.7), dietary choices (6.4 ± 2.4), hemp/CBD\noil (6.3 ± 3.0) and acupressure (6.3 ± 1.6) were the\nmost effective. Physical interventions such as yoga/\nPilates (4.5 ± 2.0), stretching (4.6 ± 2.1) and exercise\n(4.9 ± 2.4) were rated as being less effective. A com-\nparison of the different types of diet (e.g. paleo,\nTable 1 Characteristics of survey respondents ( N = 484)\nAge (y) Mean (SD)\n31 (7.4)\nPPIQ Scores (0 –4) (listed greatest to lowest impact) N (%)\nStomach/GI function 2.6 (0.5)\nEnergy levels 2.6 (0.4)\nMood 2.4 (0.4)\nClothing 2.3 (0.4)\nPhysical activity 2.3 (0.3)\nWork/School 2.2 (0.3)\nSleep 2.1 (0.3)\nSitting 1.5 (0.2)\nTotal 17.9 (2.7)\nRegion N (%)\nUrban 374 (78%)\nRural 103 (21%)\nRemote 3 (< 1%)\nUsed self-management in last 6 months? N (%)\n371 (76%)\nSelf-management used in last 6 months\n(listed most to least common)\nN (%)\nHeat 259 (70%)\nRest 252 (68%)\nMeditation/Breathing 175 (47%)\nDietary choices (such as gluten free, vegan) 163 (44%)\nExercise 158 (42%)\nStretching 148 (40%)\nYoga/Pilates 131 (35%)\nMassage 118 (32%)\nHerbal medicines 61 (16%)\nAlcohol 51 (14%)\nCannabis 48 (13%)\nAcupressure 29 (8%)\nCold 18 (5%)\nHemp oil/CBD oil 12 (3%)\nTaichi/Qigong 8 (2%)\nArmour et al. BMC Complementary and Alternative Medicine           (2019) 19:17 Page 3 of 8\n\nvegan, FODMAP) did not show any relationship be-\ntween a specific diet and self-reported improvement\n(p = 0.097).\nWhen women were asked about the effect\nself-management had on their need for medications\nneeded to manage their endometriosis symptoms, the\nmost effective was cannabis. Fifty six percent of cannabis\nusers reported being able to reduce their endometriosis\nrelated medication by more than 50% and another 27%\npercent of users reported being able to reduce medica-\ntion by 25 –50%. Other self-management practices were\nconsiderably less effective in medication reduction; a\nthird of CBD or hemp oil users reported being able to\nreduce their endometriosis related medication by 50% or\nmore, while only 18% of those who used a specific diet\nreported being able to reduce their endometriosis related\nmedication by 50% or more. The full list of each\nself-management option and its effect on medication is\nreported in Additional file 2: Table S1.\nAdverse events during self-management\nAdverse events varied considerably between\nself-management interventions (Table 4). Alcohol usage\nshowed the greatest number of self-reported adverse\nevents, with just over half (52.8%) of users reporting an\nadverse reaction. The most common reported events\nwere viesalgia (hangovers) and increases in pain and fa-\ntigue after alcohol usage. Exercise also showed a large\nnumber of adverse events, with just over one third of\nwomen reporting adverse events (34.2%). The most\ncommon adverse events were increased pelvic pain (es-\npecially cramping pain), increased frequency of ‘flare\nups’, and increased fatigue. Heat users reported adverse\nevents (15.9%), most commonly burns. Increased pelvic\npain was reported in 15.9% of yoga and Pilates, but these\nreports were mostly linked to Pilates rather than yoga.\nTable 2 Reasons for non-use of self-management ( N = 109),\nlisted most to least commonly reported\nReason N (%) a\nNot enough information to make decision 39 (36%)\nTime commitment 31 (28%)\nCost 30 (28%)\nIneffective in previous experience 29 (27%)\nDifficulty accessing 19 (17%)\nOther 15 (14%)\naMore than one response was allowed, therefore percentages sum to greater\nthan 100\nTable 3 Level of self-reported pain relief from self-management\nmodalities, listed from greatest to smallest reported pain\nreduction\nModality used for self-management Pain relief (0 –10 scale)\nMean (SD)\nCannabis 7.6 (2.0)\nHeat 6.5 (1.7)\nDietary choices (such as gluten free, vegan) 6.4 (2.4)\nHemp oil/CBD oil 6.3 (3.0)\nAcupressure 6.3 (1.6)\nCold 5.5 (2.7)\nMassage 5.5 (2.1)\nRest 5.3 (2.1)\nExercise 4.9 (2.4)\nHerbal medicines 4.8 (2.5)\nAlcohol 4.7 (2.3)\nStretching 4.6 (2.1)\nMeditation/Breathing 4.6 (2.1)\nYoga/Pilates 4.5 (2.0)\nTaichi/Qigong 4.0 (1.7)\nTable 4 Adverse events from self-management modalities,\nlisted from most to least commonly reported\nModality used for\nself-management\nAdverse event rate\n% (of women using\nthat modality)\nMost common\nreported types of AE a\nAlcohol 52.8 Hangover symptoms,\nincreased pain, increased\nfatigue\nExercise 34.2 Increased adhesion/pelvic\npain, increased fatigue,\nincreased flare ups\nYoga/Pilates 15.9 Increased adhesion/pelvic\npain\nHeat 15.9 Burns (including blistering)\nStretching 14.8 Increased adhesion/pelvic\npain, increased nausea,\nincreased flare ups\nCannabis 10.2 Drowsiness, Increased\nanxiety, tachycardia\nHemp oil/CBD oil 8.3 N/A\nRest 7.3 Increased fatigue,\nincreased depression\nAcupressure 7.1 N/A\nMassage 6.8 N/A\nDietary choices\n(such as gluten\nfree, vegan)\n5.9 Gastrointestinal upset\nCold 5.6 N/A\nMeditation/\nBreathing\n3.4 N/A\nHerbal medicines 3.2 N/A\nTaichi/Qigong 0 N/A\naCategorized from the free text responses provided. Responses were\nconsidered ‘common’ when 25% or more of the respondents included them.\nN/A denotes where (due to the small number of responses) there was no AE\nthat met the 25% threshold\nArmour et al. BMC Complementary and Alternative Medicine           (2019) 19:17 Page 4 of 8\n\nDiscussion\nThe use of self-management strategies, especially\nnon-pharmacological practices, in chronic illnesses is\ncommon [ 19]. Women with endometriosis often feel\nfrustrated at the lack of effective medical treatments and\ntherefore turn to self-management [ 20] as one of the\ncoping strategies to manage their condition [ 21]. Women\nwith endometriosis often feel disempowered [ 20], and\nself-management strategies may help them feel a sense of\nagency and empowerment [ 22]. Our survey findings sup-\nport this: both self-management techniques and lifestyle\ninterventions or modifications are a common and import-\nant part of Australian women ’s self-management strategy\nwhen dealing with the symptoms of endometriosis.\nUsage of self-management was high in women with\nendometriosis, with overall rates of self-management be-\ning similar to those observed in women with primary dys-\nmenorrhea [ 13]. The use of self-management techniques\nthat includes components that may be considered to be\n‘complementary’ or ‘alternative’ such as yoga or acupunc-\nture can form an important part of self-management for\nwomen, and are often [ 23], but not always [ 20], seen as an\nadjunct rather than a replacement for, mainstream med-\nical care.\nThe mean age of women in our study (31 years old) is\nsimilar to other studies on women with endometriosis in\nEurope (33 years) [ 7], South Africa (33 years) [ 21] and\nprevious research undertaken in Australia (31 years)\n[24]. The impact of endometriosis on the lives of women\nin this study is comparable to worldwide impact reports\n[18]. The greatest impacts were in energy levels, gastro-\nintestinal function, and mood, which may directly relate\nto the choices of self-management strategies that women\nmake. For example, women with endometriosis may use\nyoga, cannabis or hemp/CBD oil to improve their mood\nand make dietary changes to self-manage gastrointestinal\nproblems.\nDiet, while not as commonly used as rest and heat,\nwas used by almost half the women in the survey.\nDiet had high self-reported improvement scores and\nexamination of the types of diets used showed there\nwas significant diversity; with paleo, vegan, gluten\nfree, FODMAP and Mediterranean diets being the\nmost common sub-types of diet. Given the significant\nproportion of women with endometriosis who also\nhave gastrointestinal [ 25] and IBS-like symptoms [ 14],\ndietary changes, such as a FODMAP diet, may reduce\npelvic pain symptoms that could be exacerbated by\nIBS or gastrointestinal symptoms. This is likely to\noccur via a reduction in intestinal distention and sub-\nsequent reduction in visceral nerve activation [ 14]. In\nour survey, there was no specific sub-type of diet re-\nported that was related to a significantly greater\nself-rated improvement. This appears to be in line\nwith current reviews which find there are no consist-\nent dietary predictors for endometriosis [ 26].\nHeat was the only modality that was both commonly\nused and rated as effective by women. There are no\nstudies looking specifically at heat for endometriosis re-\nlated pain but previous research provides evidence that\nheat reduces primary dysmenorrhea [ 27]. Heat may work\nvia both increasing blood flow in the abdominal area\n[28] and by the ‘gate control ’ theory of pain inhibition,\nwhere topical heat activates thermoreceptors, inhibiting\nconcurrent nociceptive signals reaching the brain [ 27].\nHowever, despite its effectiveness, a significant number\nof women reported adverse events with heat, most com-\nmonly burns. Therefore, consideration should be given\nto the use of heat patches that deliver controlled heat at\na safe temperature.\nThe first reported use of cannabis being used as a\nmedicine for female reproductive complaints was in\nChina ca. 2700 BCE. More recently, phytochemical con-\nstituents within the plant such as the cannabinoids\nΔ9-Tetrahydrocannabinol (THC) [ 29, 30], Δ9-Tetrahy-\ndrocannabivarin (THCV) [ 31] and Cannabidiol (CBD)\n[32] have demonstrated noted pharmacological activity,\nspecifically analgesic and anti-inflammatory effects. Can-\nnabis, while only used by 13% of women in this survey,\nhad the highest pain relief score and greatest reduction\nin medication usage of any strategy assessed. This latter\nfinding is mirrored in other international cannabis stud-\nies showing a reduction in pharmaceutical medication\nusage for pain management, with recent evidence dem-\nonstrating that cannabis may assist in de-prescribing\nfrom pharmaceutical medication, particularly opiates\nand benzodiazepines, in what is dubbed the substitution\neffect [ 33]. Whilst further studies specific to the endo-\nmetriosis population are required, considering the\nknown abuse, risk of addiction and overdose mortality\nrates with opiate medications [ 34], coupled with recent\nevidence suggesting medicinal cannabis can reduce pre-\nscription opiate overdose mortality rates significantly\n[35], quality assured medicinal cannabis may play a role\nas both an adjunct analgesic and harm reduction agent.\nAustralia introduced the Narcotic Drugs Regulation in\nDecember 2016 to legalise cannabis for medicinal use,\nwith medical practitioners being able to prescribe canna-\nbis products through various avenues including the Spe-\ncial Access Scheme and Authorised Prescriber pathways.\nWhilst government pathways do not preclude endomet-\nriosis or pelvic pain patients from access in Australia,\ncurrent numbers of approved patients based on clinical\nindication is suggestive that survey respondents were\nutilising illicit cannabis.\nBoth rest and physical activity have been reported as\neffective self-management practices in women with pri-\nmary dysmenorrhea [ 12, 36]; however, the findings in\nArmour et al. BMC Complementary and Alternative Medicine           (2019) 19:17 Page 5 of 8\n\nthe current survey did not find these methods effective\nfor women with endometriosis, and even found high\nlevels of adverse events due to physical activity. That rest\nand physical activity are not effective self-management\nmethods in endometriosis is not altogether unsurprising;\nrest is considered a passive treatment that is ineffective\nin many chronic pain conditions [ 37, 38], as it is thought\nto promote illness behaviour [ 39] and fear-avoidance be-\nhaviour [ 40]. Similarly, engaging in vigorous physical ac-\ntivity after a period of rest or reduced levels of activity is\nineffective in treating chronic pain conditions [ 41] and\ncan often make pain symptoms worse – inducing a so\ncalled ‘flare up ’. In women with endometriosis, vigorous\nexercise may exacerbate pelvic muscle spasms that are\ncommonly seen in these women [ 42]. While physical ac-\ntivity is essential for chronic pain recovery [ 43], it needs\nto be gradual (graded exposure) to avoid flare ups, to\nimprove physical activity tolerance, and to allow individ-\nuals to return to their usual level of daily activity [ 41].\nThere are clear strengths to this study. First, women\nmust have had endometriosis diagnosed via laparoscopy\nwithin the previous 5 years, providing a specific popula-\ntion. Despite laparoscopic investigation being the gold\nstandard in diagnosing endometriosis, some research\nstudies continue to include women with diagnoses of\nendometriosis based on symptomology reports alone,\nleading to potential bias from differential or overlapping\nconditions. Second, the sample size obtained was large\nin comparison to other survey methodologies with simi-\nlar populations. Finally, the online survey methodology\nallowed participants to have anonymity. Greater ano-\nnymity improves the willingness of participants to dis-\nclose sensitive information [ 44], such as drug use, which\nincreases the confidence that the present results truly re-\nflect all self-management measures taken by women\nwith endometriosis.\nImportantly, the findings from this study should be\ntaken into consideration with the study limitations.\nDue to the use of social media as a recruitment tool,\ncalculating a response rate is not possible, therefore\nany generalisability of these findings must be done\nwith caution. Women recruited via support/advocacy\ngroups often have more severe symptoms than those\nrecruited via other methods [ 45]; however, our sample\nhad very similar PPIQ scores to a large international\nsample [ 18]. A small portion of the population came\nfrom remote regions of Australia. Arguably, women\nin remote regions may use different self-management\nmeasures due to the decreased availability of medical\nresources; however, the small sample size obtained\ndid not allow for any analyses that might detect dif-\nferences. In addition, the questionnaire offered no free\nresponse section in which women could nominate\nother self-management measures not listed. There is\nthe potential that women with endometriosis use add-\nitional or alternative self-management measures, but\nthis information was not able to be captured by this\nquestionnaire. Reporting of reduction in endometri-\nosis related medication did not collect data on what\nclass of medication (e.g. analgesics) were being re-\nduced. To reduce survey length, broad categories\nwere used and therefore comparisons between specific\nsub-types (e.g. walking vs vigorous exercise) was not\npossible. Combination of yoga and Pilates into one\ncategory may obscure the effect of these two prac-\ntices, as demonstrated by the free text reporting for\nadverse events with Pilates. Finally, all measures were\nself-reported, therefore all indications of effectiveness\nand adverse events are based on women ’s own recall,\nand this may lead to either over or underestimation\nof benefits and harms.\nConclusions\nGiven the lack of a ‘cure’ for endometriosis, effective\nself-management techniques and lifestyle changes may\nplay an important role in ongoing self-management by\nempowering women to take more control over their\nown health and providing an effective adjunct to their\ncurrent treatment regimes. Women with endometriosis\nhave unique needs compared to women with primary\ndysmenorrhea, and therefore any self-management prac-\ntices, especially those that are physical in nature, need to\nbe considered in light of the potential for ‘flare ups ’.\nCannabis users report significant effectiveness for redu-\ncing endometriosis related pain and related symptoms,\nhowever the number of women using it is small and out-\ncomes all self-reported, therefore future clinical trials in\nthis area are required to determine any possible role in\nendometriosis management utilising legally obtained and\nquality assured medicinal cannabis. Medicinal cannabis\nis becoming available in a growing number of locations\nbut remains illegal for treating pelvic pain in many\ncountries. Therefore, cannabis should only be considered\nas a possible self-management option by those who can\nobtain medicinal cannabis through legal means.\nAdditional files\nAdditional file 1: A Survey tool. Full copy of survey used for data\ncollection. (PDF 284 kb)\nAdditional file 2: Table S1. Reduction in medication usage due to the\nuse of self-management. Changes in endometriosis related medication\nfor all self-management modalities. (DOCX 22 kb)\nAbbreviations\nCBD: Cannabidiol; FODMAP: Fermentable oligosaccharides, disaccharides,\nmonosaccharides and polyols; PPIQ: Pelvic pain impact questionnaire;\nTHC: Tetrahydrocannabinol\nArmour et al. BMC Complementary and Alternative Medicine           (2019) 19:17 Page 6 of 8\n\nAcknowledgements\nThank you to Endometriosis Australia and EndoActive for their support in the\npromotion of this survey.\nFunding\nNo external funding was provided. Western Sydney University provided\nfunding for all authors as part of their normal academic roles.\nAvailability of data and materials\nThe datasets used and/or analysed during the current study available from\nthe corresponding author on reasonable request.\nAuthors’ contributions\nMA and JS conceptualised the survey, MA, JS, KJC and CS designed the\nsurvey questions, MA and JS performed the data analysis, MA drafted the\nmanuscript, JS, KJC and CS provided critical feedback and edits to the draft.\nAll authors approved the final manuscript.\nEthics approval and consent to participate\nThis survey was approved by the Western Sydney University Human\nResearch Ethics Committee, approval number H12394. Participants were\nadvised in the participant information sheet and survey introduction (prior to\nstarting the survey) that consent was implied by completing the survey.\nConsent for publication\nNot applicable\nCompeting interests\nMA, JS and CS: As a medical research institute, NICM Health Research\nInstitute receives research grants and donations from foundations,\nuniversities, government agencies and industry. Sponsors and donors\nprovide untied and tied funding for work to advance the vision and mission\nof the Institute. This survey was not specifically supported by donor or\nsponsor funding to NICM.\nIn addition, JS sits on the Scientific Advisory Board for BioCeuticals. He is also\non the Scientific Advisory Board for United in Compassion in a pro bono\ncapacity.\nKJC: None known.\nPublisher’sN o t e\nSpringer Nature remains neutral with regard to jurisdictional claims in\npublished maps and institutional affiliations.\nAuthor details\n1NICM Health Research Institute, Western Sydney University, Building 5,\nCampbelltown Campus, Locked Bag 1797, Penrith, Sydney, NSW 2751,\nAustralia. 2School of Science and Health, Western Sydney University, Sydney,\nAustralia.\nReceived: 3 July 2018 Accepted: 8 January 2019\nReferences\n1. Howard F, Perry P, Carter J, El-Minawi A. Pelvic pain: diagnosis and\nmanagement. Philadelphia: Lippincott Williams and Wilkins; 2000.\n2. Ahangari A. Prevalence of chronic pelvic pain among women: an updated\nreview. Pain Physician. 2014;17(2):E141 –7.\n3. Hickey M, Ballard K, Farquhar C. Endometriosis. BMJ. 2014;348:g1752.\n4. Whitaker LH, Reid J, Choa A, McFee S, Seretny M, Wilson J, Elton RA,\nVincent K, Horne AW. 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