Download - Endometriosis, an unknown entity: the consumer's perspective

200

International Journal of Consumer Studies

27

3 June 2003 pp200ndash209

copy 2003 Blackwell Publishing Ltd

Blackwell Science LtdOxford UKJCSInternational Journal of Consumer Studies1470-6431Blackwell Publishing Ltd 200327Original Article

Endometriosis

H Cox

et al

Correspondence

Dr Chantal Ski Centre for Clinical Nursing Research Epworth Hospital 89 Bridge Road Richmond Victoria 3121 Australia E-mail chantskideakineduau

Endometriosis an unknown entitythe consumerrsquos perspective

Helen Cox

1

Chantal F Ski

1

Ros Wood

2

and Margo Sheahan

1

1 Deakin University and Centre for Clinical Nursing Research Epworth Hospital Richmond Victoria Australia2 Endometriosis Association (Vic) Ringwood Victoria Australia

Abstract

This paper reports the findings of a consumer-driven inves-

tigation conducted by the Centre for Clinical Nursing

Research at Epworth Hospital in conjunction with the

Endometriosis Association (Victoria Australia) aimed at

identifying the information and support needs of women

experiencing endometriosis Womenrsquos experiences of

endometriosis and laparoscopy were examined A question-

naire was designed to explore womenrsquos experiences of and

informational need for the four categories of diagnosis of

endometriosis endometriosis laparoscopy and managing

at home A total of 465 women who had a positive diagnosis

of endometriosis including patients at the Epworth

Endometriosis Centre and members of the Endometriosis

Association were included The data were analysed in terms

of frequency of responses and themes that arose from the

research Five main themes consistently emerged from the

overall analysis of the questionnaire these included lack

of communication no-one listens the emotional turmoil

expressions of gratitude to the Endometriosis Association

and being young and helpless Also identified was a lack of

understanding of endometriosis and laparoscopy on behalf

of both the patient and the practitioner which has led to

communication of misinformation extended physical pain

and emotional distress Based on these findings recom-

mendations were made for education strategies to be

focused towards increasing awareness of endometriosis

and for information to be disseminated using the preferred

printed format and to be made available from gynaecolo-

gists hospitals and schools Through consumer participa-

tion the information obtained in this study is of benefit to

all women who come in contact with endometriosis by (a)

validating womenrsquos experiences of endometriosis and (b)

identifying womenrsquos needs in relation to the disease

Keywords

Endometriosis

laparoscopy

education

consumer

awareness

Endometriosis Association

Introduction

Endometriosis affects the emotional well-being andphysical health of as many as 600 000 Australianwomen who suffer such symptoms as pelvic pain sexualdysfunction menstrual irregularities and infertility

1

Endometriosis is a mysterious disease in which frag-ments of the lining of the uterus (womb) becomeembedded or implanted elsewhere in the body

2

Manywomen find their lives disrupted by pain fatigue infer-tility surgical procedures and the side-effects of drugtreatment all of which can make endometriosis a dis-abling condition physically socially and emotionally

3

Adding to the distress is that very little is knownabout endometriosis

45

including precisely howendometriosis develops

6

Endometriosis has often beenreferred to as the lsquodisease of theoriesrsquo resulting from thenumerous theories that have been proposed in anattempt to explain the process

78

The most popular ofthese is the retrograde menstruation theory This refersto reverse menstruation which carries blood to the pel-vis and Fallopian tubes during menstruation instead ofout of the vagina With no means of exiting the bodythis then leads to the formation of scar tissue that beginsendometriosis

910

Women who are diagnosed with endometriosis havemuch to deal with Many fear that they will never bepain free get pregnant or have a normal life as notreatment is entirely satisfactory and the disease has ahigh recurrence rate Studies have indicated that

ordf

20of women will have a recurrence of their symptoms ofendometriosis within 12 months of treatment regard-less of the type of treatment A further 50 will haverecurrence within 5 years

1

The longer a woman mustdeal with the symptoms of and treatment for endometri-osis the more likely she is to feel overwhelmed andpowerless

4



27


201

H Cox

et al

bull

Endometriosis

Psychological distress involving emotions such asfear anger and depression affects many endometriosissufferers In spite of this there is an absence of pub-lished work that examines the psychosocial impact ofendometriosis

56

The disease is also costly in terms ofits adverse effects on womenrsquos quality of life and sucheconomic measures as lost work days and reducedproductivity

7

One of the most puzzling features of this disorder isthat the severity of the disease can vary greatly Symp-toms can be so severe that daily living is extremelydifficult

11

Primary symptoms include dysmenorrhoeadyspareunia generalized pelvic discomfort and painwhich may permeate the lower back or inner leg

12

Pain-ful bowel movements at the time of menses are a lesscommon but quite specific symptom Also there is nodoubt that as a result of damage to the tubes and ova-ries endometriosis often results in infertility

13

Addingto the perplexity endometriosis can also be asymptom-atic The majority of women suffer symptoms that aresomewhere in between

14

Diagnosing endometriosis can be extremely difficultnot only because severity of the disease does not alwayscorrelate with the amount of pain but also because ofthe numerous possible causes of its common presentingsymptoms such as pelvic pain or infertility Endometri-osis has the ability to mimic a host of other disordersAs a result even though the symptoms may lead a doc-tor to suspect endometriosis a true diagnosis can onlybe confirmed through direct observation At present nosimple non-evasive technique is available for diagnosingthe disease Laparoscopy remains the definitive way todiagnose endometriosis

10

The laparoscopic procedure iswhen a telescope with an illuminated optical system isinserted into the abdomen through a small incision nearthe umbilicus

Although there are several treatment options thereis no cure

1014

Over the past decade a number ofstudies have indicated that both medical and surgicaltreatments appear to have limited long-termeffects

710

Of those that are considered successfulthere is no evidence to suggest that treatment of thedisease alone improves infertility

12

Overall there isno favoured treatment of choice for endometriosisnor a reliable diagnostic procedure to predict treat-ment outcome

15

Womenrsquos dissatisfaction with traditional models andsystems of care has been widely articulated

1617

Therole of women as the major users of health care ser-vices as well as the principal decision-makers in seek-ing care for themselves as well as family members isnow well recognized

18

To improve the process of carefor women a greater understanding of what womenbring to the medical encounter needs to be recognizedWomenrsquos experiences of endometriosis should be com-municated not only to the practitioner but also to otherwomen

Because of the obscurity of the disease for bothpatient and practitioner a need has been identified toraise the awareness of endometriosis This in conjunc-tion with anecdotal evidence from members of theEndometriosis Association (Victoria) that endometrio-sis is often ignored or not taken seriously promptedthe Endometriosis Association in conjunction with theDeakinEpworth Centre for Clinical Nursing Researchto undertake the current study The objective of ourinvestigation was to obtain information from womenwho have experienced endometriosis and laparoscopyin order to (a) identify and meet the informationneeds of women experiencing endometriosis and (b)develop strategies to raise the awareness ofendometriosis

Method

A questionnaire with open and closed questions draw-ing both quantitative and qualitative data was devel-oped to understand better the experiences andinformation needs of women with endometriosis Thesurvey was divided into five sections diagnosisendometriosis laparoscopy managing at home andgeneral comments Surveys were sent to a total of 1031participants Of these 481 were patients of theEpworth Endometriosis Centre and 550 were eithermembers of the Endometriosis Association (Vic) orwomen who had been in contact with the Associationin the 3 months before the questionnaire distributionTwo hundred and fifty-nine questionnaires werereturned lsquoaddress unknownrsquo and 34 were returnedincomplete the remaining 465 completed surveys com-prised the total sample A response rate of 65 wasachieved

Endometriosis

bull

H Cox

et al

202


27



Sample characteristics

Women who participated in the study were from thestates of Victoria New South Wales South Australiaand Tasmania The majority resided in Victoria (76)Approximately three-quarters of our sample were frommetropolitan townships (

n

=

345) with a quarter fromrural areas (

n

=

120) Ages of women ranged between12 and 50 years (

c

=

33 SD

=

534) The majority of par-ticipants were aged between 20 and 44 years (77)

Results

Findings are presented as per the five sections of thesurvey diagnosis endometriosis laparoscopy managingat home and general comments

Diagnosis

Of concern were the notable time delays it took womenan average of 38 years between first having symptomsand seeking medical advice and a further 37 years onaverage to get a diagnosis The total delays ranged from0 to 33 years Although this does not explain why thesewomen delayed seeking medical advice it does providea good indication that increased awareness of and edu-cation about the disease may help to improve thesituation

Individual responses however were able to provideinsight into the reasons for time delays Indicated by themajority of women were perceptions of two main con-tributing factors for delay (a) not being listened to and(b) a lack of understanding For example lsquoI have beento a number of gynaecologists seeking confirmation ofmy symptoms only to be told the familiar story ofyoursquore a woman you should expect painrsquo and lsquoEvenwhen I informed the doctor of my suspicions that it maybe endometriosis he said that it was extremelyunlikelyrsquo Also many women stated that they had lsquonoidearsquo of what this lsquothingrsquo called endometriosis was

Nearly all women expressed their desire for moreinformation in relation to all aspects of endometriosisincluding symptoms diagnosis laparoscopy and manag-ing at home issues This call to increase the awarenessof endometriosis provides us with a clear indication ofwhat women want By increasing womenrsquos understand-

ing of endometriosis this may well lead to early detec-tion of possible symptoms and may therefore lead toless delay in seeking medical advice Other womenrsquosresponses exposed the practitionerrsquos role in the delayexperienced from time seeking medical advice to timebeing diagnosed

lsquoGPrsquos should be better trained in the diagnosis ofendometriosis I had an immense number of male andfemale doctors in the 15 years of my symptoms pro-gressing and changing ndash and yet I was the only onewho seemed to know what it wasrsquo

also

lsquoI would like to know why it took 10 years for theproblem to be recognized It began with bladderproblems painful periods and heavy bleeding perhaps the urologist specialist should be aware thatbladder problems may also be caused by other thingsrsquo

These responses exemplify how awareness and edu-cation need to be increased for the practitionerspecial-ist as well as the patient A more comprehensiveunderstanding of endometriosis by practitioners wouldin turn lead to a reduction in many of the physicalcognitive and social costs currently experienced bywomen

Most women reported their gynaecologist to be theperson who first recognized their symptoms asendometriosis Four per cent of our sample stated thattheir endometriosis was found lsquoaccidentallyrsquo with manyof these women being asymptomatic Stories of womenwho were asymptomatic often described how theirendometriosis was discovered when being examined forother procedures For example lsquoMy endometriosis wasfirst picked up by an internal ultrasound for anotherproblem (it discovered an endometrial cyst on myovary) I experienced no physical symptoms (ie pain)of endometriosisrsquo Women expressed emotions of shockand disbelief when they were unexpectedly diagnosedwith endometriosis These emotions were often intensi-fied when they found themselves without warninghaving to cope with two adverse diagnoses ie whenadmitted for other procedures such as ectopic preg-nancy or removal of ovarian cysts



27


203

H Cox

et al

bull

Endometriosis

Conversely women who had spent many yearssearching for answers to their symptoms expressedmuch relief at having someone who could finally put aname to their condition This was described by some asa lsquoliberating experiencersquo The psychological impact ofbeing diagnosed was of great significance for thesewomen Their self-doubts and fears of the lsquounknownrsquohad been replaced with a sense of empowerment

Endometriosis

Approximately half our sample (

n

=

239) reported thatthey did not receive any information on endometriosiswhen first diagnosed and very few women stated thatthey were supplied with all the information theyneeded Information most sought was that relating tolsquopossible relapsersquo lsquoalternative treatmentrsquo lsquorisks of treat-mentrsquo and lsquodevelopment of endometriosisrsquo Responsesrequesting lsquoanyrsquo and lsquoallrsquo endometriosis informationwere also significant in number Reasons that womenoffered for their informational needs were similar innature ie lsquo being diagnosed with endometriosis canbe a shock when you know nothing about itrsquo Oneresponse captured the plight of their circumstancesexceptionally well

lsquo at the start I was scared beyond belief and all myfamily were asking me questions regarding end-ometriosis that I did not have any answers to Thismade me feel worse as I realized how little I knewabout what was about to happen to me and I had nocontrol or possible solutions for endometriosis or howto cope with itrsquo

Requests for information about the relationshipbetween endometriosis and fertility were also commonFor example lsquoI only wish I had done something earlierI did not realize what the damage had done [made meinfertile] I guess as they say ldquoIf I only knew then whatI know nowrdquo rsquo Narratives such as this exemplify howimportant it is to increase awareness of endometriosisand educate women on endometriosis including all pos-sible treatment options

Women clearly indicated that the most helpful infor-mation they received about endometriosis was informa-tion provided by the Endometriosis Association The

book

Explaining Endometriosis

1

produced by twofounders of the Association Lorraine Henderson andRos Wood was referred to by several women asextremely helpful This is a comprehensive but easy-to-understand book on the nature of endometriosis andthe treatment options available in Australia Manywomen also believed that the most helpful informationreceived was being told that endometriosis is commonndash that they didnrsquot imagine it Typical of most commentswere lsquoI was not the only one many people have itrsquo lsquoIwas normal and not a hypochondriac there was a rea-son I was sufferingrsquo and lsquothe pain was not in my head ndashfinally a name to the painrsquo Comments such as thesetogether with reports that many women found theirmost helpful information to be that which they hadresearched themselves by means of journals books andthe Internet further identify the need for increasing theawareness of endometriosis

Understanding the needs of women who have expe-rienced endometriosis was one component of the cur-rent study Identifying methods for distribution ofinformation about endometriosis was the other compo-nent To develop the most accessible methods for circu-lation of preferred material a set of questions at the endof each section of the survey was devoted to obtainingwomenrsquos preferences on information source and format

On the whole women indicated that they would liketheir endometriosis information to come from a rangeof sources Women were informed that they could nom-inate more than one source as such percentages are notcumulative lsquoGynaecologistrsquo was their number one pref-erence selected by 83 of women (

n

=

388) Otherpopular sources were lsquogeneral practitionerrsquo (41

n

=

189) Endometriosis Association (33

n

=

152) andlsquohospitalrsquo (25

n

=

116) Women recorded a range offormat preferences lsquoPrintedrsquo was nominated by 91 ofwomen (

n

=

423) with over half (54

n

=

249) alsoindicating that they would like to be informed lsquoverballyrsquoand approximately a quarter of the sample nominatinglsquoweb sitersquo (17

n

=

80) and lsquoe-mailrsquo (6

n

=

29)

Laparoscopy

Three-quarters of the women surveyed were admittedfor day surgery Over half the participants stated thatthey were not given enough information with regard to

Endometriosis

bull

H Cox

et al

204


27



laparoscopy (

n

=

236) Women said that they wouldhave liked information on a range of laparoscopy-related issues Amount of pain post-operatively wasreported as their number one priority for 67 of allparticipants (

n

=

311)

lsquoNothing prepared me for the shoulder pain ndash I hadto lie flat for one week in sheer agonyrsquo

and

lsquoI had no idea about the burning pain associated withgas (related to the gas that is inserted into the abdo-men during the procedure which causes irritation tonerves)rsquo

These are two of many pain-related stories that wererelayed by women sufferers Women frequentlydescribed the severe pain they endured after day sur-gery Issues relating to recovery were also a main con-cern nominated by 63 of women (

n

=

293) withemphasis being placed on loss of working days such aslsquoHow much recovery time I would need after Howlong I might need off workrsquo The following samplepercentages indicate that overall women were inter-ested in receiving as much laparoscopy-related infor-mation as possible Categories included lsquopossiblecomplicationsrsquo (51) lsquogeneral anaestheticrsquo (45)lsquoassociated proceduresrsquo (44) lsquomanagement of woundrsquo(44) lsquowhat laparoscopy isrsquo (41) lsquowhat to expectrsquo(40) lsquolength of operationrsquo (37) lsquopossible number ofcutsrsquo (31) lsquolocation and size of cutsrsquo (28) and lsquopos-sible drip in armrsquo (26)

The two areas of information about laparoscopy mostsought after by 63 of women were about pain andrecovery time Other requested laparoscopy informa-tion included lsquowaiting time between admission and sur-geryrsquo (46) lsquobetween surgery and dischargersquo (40)lsquotravelling homersquo (27) lsquowhether a relativefriendcould be presentrsquo (25) lsquovisit by anaesthetistrsquo (21)lsquowhat to bringrsquo (19) lsquohome carersquo (16) lsquopost-surgicalcontactsrsquo (15) lsquoremoval of body hairrsquo (13) lsquoprepa-ration for diagnosisrsquo (12) lsquopossible complicationsrsquo(12) lsquoovernight stayrsquo (10) and lsquoalternative treat-mentsrsquo (10) Format preferences for this type ofinformation were printed and verbal consultation

Gynaecologist was womenrsquos first preference for sourceand hospital was their second

Table 1 displays the types of information that womenwould have liked with regard to the outcome of laparos-copy As can be seen by frequency of requests themajority of women are requesting information rangingacross a number of issues For the most part commentsmade by women in response to lsquootherrsquo informationneeds for outcome of laparoscopy were directedtowards more accurate and timely diagnosis ofendometriosis For example lsquoPreferably not when underthe anaesthetic as it is hard to remember exactly whatwas saidrsquo lsquotoo drowsy to recallrsquo and lsquocanrsquot rememberoutcome ndash was still druggedrsquo In addition to these com-ments a number of women also expressed the need forinformation relating to fertility and possible treatmentoptions

Documented by several women were stories of howthere was no helpful information relating to the out-come of laparoscopy available at the time as onewoman described lsquonothing helpful the whole experi-ence was a nightmarersquo Their concern at being given noinformation was accentuated by the women who putinto words their attempts to obtain information throughpersonal research for example lsquoThe only information Ihave was due to my own research I certainly feel thehospital GPs and gynaecologists need to take moreresponsibility to inform patients generally They alsoneed to be better informed themselvesrsquo From analternative perspective women who had experiencedmultiple laparoscopies explained how even though

Table 1

Information participants would have liked aboutoutcome of laparoscopy

Outcome of laparoscopy information Frequency Percentage

Severity of your endometriosis 317 68Where endometriosis was located 271 58Presence and location of adhesions 263 57How the endometriosis was treated 233 50Presence of any other conditions 232 50How adhesions were treated 227 49Confirmation of diagnosis of endometriosis 202 43Other 93 20

Percentages are representative of the entire sample (

n

=

465) as participants were not restricted in their number of information preferences



27


205

H Cox

et al

bull

Endometriosis

information became more accessible with each proce-dure their informational needs had still not been metas one woman affirmed lsquo after five laparoscopies Istill believe much more awareness is neededrsquo

Those women who did receive information on theoutcome of their laparoscopy reported that the mosthelpful information was diagnosis of endometriosis andbeing told that it was treatable Womenrsquos preferredsources of information were the gynaecologist and theEndometriosis Association Printed material was themost popular format including diagrams and photo-graphs for example lsquolooking at an actual photo of myendometriosis was most helpfulrsquo lsquodrawing of diagnosison paper helped me to understandrsquo and lsquobeing shownwhere the endo was on a diagram made it easier tocomprehendrsquo

A central concern of womenrsquos experiences relating tolaparoscopy was that they were either misinformed ornot advised at all about the amount of pain and lengthof recovery time that would be endured after surgeryComments such as lsquoMore pain and longer recovery timethan advised by doctorsrsquo lsquoNeeding to take more timeoff workrsquo and lsquoMore painful than expected after effectssoreness depressionrsquo were not uncommon The moredescriptive anecdotes were at best unsettling forexample lsquoI felt like I had been in a boxing ring It wasdescribed as minor surgery but I couldnrsquot move for afew daysrsquo and lsquoI was not ready to go back to work fourdays after surgery as I was told I would be Full recoverytook about 6 weeks ndash much longer than expectedrsquo Themost cited recovery times experienced were thosebetween two and four weeks

Managing at home

Responses to the lsquoManaging at homersquo section of thesurvey identified a great deal of interest from womenwanting to access this type of information Areas mostsought after reflect the two main interests shown bywomen throughout the survey pain and recovery timeMore specifically in relation to recovery women weremost interested in lsquotime needed off workrsquo includinglsquodays in bedrsquo lsquodays recuperatingrsquo and lsquodays feeling illrsquoInformation wanted relating to pain after surgery wasmostly lsquoabdominal painrsquo lsquoshoulder painrsquo and lsquoexcessivepain and recognizing problemsrsquo Table 2 displays the

diverse range of issues women would have liked infor-mation on in relation to managing at home Womenspecified their preferred format for receiving this infor-mation as either printed or verbal Gynaecologist andhospital were designated as the sources from where theywould most like to receive this information

General comments

The final section of the survey lsquoGeneral commentsrsquo wasincluded for the purpose of identifying any concernsof women diagnosed with endometriosis that had notbeen addressed In this section a number of womenexpressed their appreciation of the opportunity that thisresearch offered them in terms of lsquobeing heardrsquo Thisview was reaffirmed indirectly through the evocativeand sincere narratives that were communicated Themain themes expressed in this section by women wereakin to those presented throughout the questionnaireThese were lack of communication no-one listensthe emotional turmoil expressions of gratitude to theEndometriosis Association and being young and help-less To help understand and increase awareness ofendometriosis their stories need to be made knownThe following narratives are only a handful of conse-quential experiences that were reported

Lack of communication

lsquoMy husband and mother collected me from hospitaland as soon as I was home I was nauseous sufferingextreme shoulder-tip pain and unfortunately sufferedfrom a seizure My family called an ambulance how-ever on arrival they (hospital staff) suggested to leaveme in bed and if more occur ndash then take me to hospitalIn hindsight a night in hospital with professional carewould have been a lot easier for allrsquo

No-one listens

lsquoI feel like GPs should be much more aware of thecondition Over a period of six years I saw about sixdoctors complaining of tiredness painful sex and othercomplaints I had varied responses Like ldquoeveryonersquostired these daysrdquo and ldquosex isnrsquot like they portray it inthe moviesrdquo Nobody was even interested in thinkingabout what it could have been and each time I felt morealone and stupid about the whole thing It wasnrsquot until

Endometriosis

bull

H Cox

et al

206


27



my periods went haywire that they could actually havea symptom to take seriously I really felt like saying ldquoItold you sordquo but no-one would have listenedrsquo

The emotional turmoil

lsquoMy day [surgery] nurse was keen for me to go homeand told me that they had ldquonot operated on my legsrdquo soI should get up despite being unable to even sit up inbed at the time I felt angry and humiliated which addedto the pain I already had I donrsquot think you should gohome unless you feel like you can cope eg feeling faintand bad pain also the lack of information about thisthing (endometriosis) I was scared I was sent home inthe dark I felt alone and out of touch I was verydepressedrsquo

Appreciation of the Endometriosis Association (Vic)

lsquoI have learnt so much about endometriosis over theyears by reading all the newsletters from theEndometriosis Association and have also taken part inthe research programme Having all this informationwill help my three daughters if they develop endorsquo andlsquoThank you for your supportrsquo

Being young and helpless

lsquoFrom my teenage years I suffered heavy and painfulperiods so it is difficult to say when endometriosis wasactually present Doctors need to be educated in askingmore questions ie family history I was continually toldit was in my mind and itrsquos just bad luck that I have aheavy period My mother and sister also suffered from

Table 2

Information participants would have liked about managing at home

Managing at home information Frequency Percentage

How many days likely before feeling normal again 336 72Abdominal pain 300 65How many days likely to need recuperating 295 63Shoulder pain 289 62How much time likely to need off work or school 288 62Tiredness 282 61Abdominal bloating 263 57How many days likely to need in bed 260 56Excessive pain 257 55Vaginal bleeding 228 49What the wound should look like 220 47Resuming sexual activity 219 47Physical activity eg swimming gym 219 47Infected wound 218 47When and if doctor or hospital should be contacted 216 46When to remove dressings 209 45Having a shower or bath 203 44Driving a car 200 43Having someone with you for the first day or two 198 43Nausea 193 42Pain on passing urine 184 40Discharging wound 170 37Excessive vaginal bleeding 166 36Help with looking after children and managing housework 162 35Vaginal discharge 160 34Using a tampon 154 33Loss of concentration 145 31When to have stitches removed 143 31How to contact doctor or hospital if needed 126 27


n

=




27


207

H Cox

et al

bull

Endometriosis

it I was the one to diagnose it and asked the GP toconfirmrsquo and lsquoBetter educate our schools please If myendo had been found earlier I (1) may have had a betterlife (2) may have had childrenrsquo

Discussion

In the context of women living in a progressive societythat prioritizes optimal health care the amount of painand torment suffered by these women made their sto-ries seem somewhat disturbingly unreal Acknowledg-ing the actuality of their experiences with endometriosisbrings us one step closer to developing strategies forbetter management of their predicament In some waysall women shared the common experiences of emo-tional suffering not understanding and not being heard

The difficulties associated with endometriosis areproblematic because of the complexity of endometriosisitself The symptoms associated with endometriosis arediverse and no single symptom is pathognomonic forthe disease To date the aetiology of endometriosisremains unknown

7

As a result endometriosis is oftendifficult to diagnose which may partly have accountedfor the long time delay experienced by these womenfrom when they first noticed their symptoms to seekingmedical advice and from seeking medical advice tobeing diagnosed The delays experienced by womenwere also due to doctorsrsquo attitudes to the symptoms ofendometriosis Many doctors do not listen seriously towomenrsquos complaints about their symptoms such asperiod pain and therefore do not consider that theremay be a physical cause for such complaints The indi-cation that delays in diagnosis are still occurring causednot only by diagnostic delays by doctors but resultingfrom delays in seeking medical advice by many of thewomen themselves signifies the need for greater educa-tion and awareness of the disease for both patient andpractitioner In addition educating the practitioner onendometriosis should in turn lead to improved patientrelations through an increased understanding of thephysical pain and emotional distress that endometriosiscan cause Education should assist the practitioner toadopt a more sympathetic attitude towards the patient

Throughout the survey there was a constant call forlsquomore informationrsquo whether it was in relation toendometriosis laparoscopy or managing at home

Women requested lsquoas much information as possiblersquo onan extensive range of issues Assisting women to obtainthis information is crucial Crucial in the sense of help-ing the patient to cope with both the physical and theemotional struggles of the disease By acknowledgingthe needs of these women we can begin to implementstrategies that will increase the awareness of endometri-osis and will provide them with the information neededto regain some control over their lives

The most disturbing and wide-reaching concerns ofwomen were those relating to pain and recovery timeafter laparoscopy The emotional impact of constantpain and fatigue leaves many feeling isolated and with-out hope Women sufferers would be better prepared todeal with the potentially excessive pain if they wereprewarned of this Acknowledgement by health profes-sionals of how lsquorealrsquo their pain is will help women toadjust emotionally This is especially true of those whohave been told that the extent of the disease is minimalWomen clearly documented the distress associated withbeing misinformed or not informed at all about thelength of recovery time The time taken to return togood health will have a significant effect on a personrsquosdaily living activities not to mention their quality of lifeFor work family and financial reasons it is extremelyimportant for women to be informed accurately of thepossible number of days in bed and of the possiblenumber of weeks before a full recovery

Also documented was the need for and success ofalternative treatments Women need to be educatedabout all possible treatment options In doing so theconsumer becomes more involved in their decisionmaking which helps to promote a healthy physicianndashpatient relationship The more women understand themore responsible they become for their actions and assuch the physician does not have to lsquotake all the blamersquo

For women to make best use of the information givento them this needs to be both accurate and timely espe-cially when being informed of their diagnosis Manywomen recalled experiences of being told about theirdiagnosis and the treatment that had been done imme-diately after surgery when they were still heavilysedated some did not recall being informed of theirdiagnosis at all The physician needs to be more atten-tive to the needs of the patient This also extends to thelanguage used Requests were made for diagnosis of

Endometriosis

bull

H Cox

et al

208


27



endometriosis to be communicated in lay terms so thatwomen would be able to lsquounderstandrsquo

Women detailed alarming stories of their unexpectedoutcome of infertility Some of the women were oblivi-ous to the possibility that when severe endometriosiscan cause infertility Not knowing that infertility may bea consequence of endometriosis involved many psycho-logical repercussions for women including grievinganger guilt and lowered self-esteem Women not onlyneed to be educated they also need to be made moreaware of the difficulties associated with diagnosing andtreating endometriosis By forewarning patients thisshould relieve much of the shock and distress that canaccompany the outcome of laparoscopy

An important piece of information established in thecurrent study was the problems that women face whendiagnosed at an early age Women documented howno information was available to young girls withendometriosis and because of this they faced manymore difficulties when attempting to deal with their con-dition Lack of awareness of endometriosis can lead toyoung girls feeling trapped within their own frighteningand often overwhelming circumstances

The current research has established that increasingawareness of endometriosis for women of all ages isessential in helping them to help themselves As withmost chronic diseases a coping mechanism is to learnas much as possible about the disease The Endometri-osis Association (Vic) can be an ongoing source of sup-port The Association is a non-profit organization thathas an active education programme It also provides itsmembers with a regularly published newsletter bro-chures and pamphlets that provide research news cop-ing help and tips Women who had discovered theAssociation acknowledged this as an excellent source ofsupport However from the numerous reports of howit took years for the Association to be discoveredefforts need to be targeted towards improving aware-ness and accessibility of the Endometriosis Association(Vic) Support groups for women with endometriosisexist all over the world Endometriosis associations arelistening to women everywhere helping to remove theisolation factor by sharing information stories andresearch directions The information obtained in thisstudy has led to the Endometriosis Association (Vic)the Epworth Centre for Clinical Nursing Research and

the Epworth Day Surgery Unit producing two bookletsThe first

19

provides women with the information neces-sary to make well-informed decisions about the man-agement of their endometriosis The second booklet

20

has been produced to help women prepare for andrecover from laparoscopy

The information provided by women withendometriosis in this study clearly directs strategies foreducation towards increasing awareness and under-standing of endometriosis Based on the advice ofwomen participants the most effective way of circulat-ing this information is in printed format from gynaecol-ogists hospitals and schools

Conclusion

This study has demonstrated a widespread lack ofunderstanding of endometriosis and laparoscopy by thepatient and practitioner This has led to misinformationextended physical pain and emotional distress Womenwith endometriosis wanted to be listened to andbelieved they wanted their support network to beknowledgeable about endometriosis they wanted oth-ers to understand the symptoms of the disease and theywanted their support system to share information aboutthe disease The practitioner can help to give thesepatients hope and a sense of control by educating themabout the disease and current therapeutic options andby identifying emotional issues There is a range ofoptions available for the management of endometriosisand consumers need to be made aware of all of these

Acknowledgments

We would like to acknowledge that this study wasfunded by the Australian Government Department ofHealth and Ageing as part of the Consumer and Pro-vider Partnerships in Health Project series (CAPPs)which were designed to develop further the evidencebase underpinning effective consumer participation

References

1 Henderson L amp Wood R (2000) Explaining Endometriosis Endometriosis Association (Vic) Melbourne

copy 2003 Blackwell Publishing Ltd International Journal of Consumer Studies 27 3 June 2003 pp200ndash209 209

H Cox et al bull Endometriosis

2 Zreik TG amp Olive DL (1997) Pathophysiology the biologic principles of the disease Obstetrics and Gynecology Clinics of North America 24 259ndash268

3 Jones KP (1988) Emotional aspects of endometriosisa physicianrsquos perspective Clinical Obstetrics and Gynecology 31 874ndash882

4 Garner C (1996) Coping with endometriosis Office Nurse 9 14ndash21

5 Wingfield MB Wood C Henderson LS ampWood RM (1997) Treatment of endometriosis involving a self-help group positively affects patientsrsquo perceptionof care Journal of Psychosomatic Obstetrics and Gynaecology 18 255ndash258

6 Canavan TP amp Radosh L (2000) Managing endometriosis Postgraduate Medicine 107 213ndash224

7 Chandler J (2000) Endometriosis the lsquodisease of theoriesrsquo British Journal of Midwifery 8 402

8 Biley A (1995) Making sense of diagnosing and treating endometriosis Nursing Times 91 33ndash35

9 Olive DL (1992) Endometriosis advances in understanding and management Current Opinion in Obstetrics and Gynaecology 4 380ndash387

10 Kwok A Lam A amp Ford R (2001) Deeply infiltrating endometriosis implications diagnosis and management Obstetrical and Gynecological Survey 56 168ndash177

11 Eskenazi B amp Warner ML (1997) Epidemiology of endometriosis Obstetrics and Gynecology Clinics of North America 24 235ndash258

12 Thomas EJ (1995) Endometriosis ndash confusion or sense International Journal of Gynaecology and Obstetrics 48 149ndash155

13 Damario MA amp Rock JA (1995) Pain recurrence a quality of life issue in endometriosis International Journal of Gynaecology and Obstetrics 50 27ndash42

14 Rosenblatt R (2000) Educate women to recognise endometriosis Practice Nurse 19 323ndash326

15 Bergvist IA Hummelshoj L Haegerstam G Ogeus B Mills DS Blomberg S Moen MH Bruse C amp Hahn L (2002) Enhancing quality of life in women and girls with endometriosis-related pain when traditional treatments have failed European Society of Human Reproduction and Embryology (ESHRE) Newsletter 31 July

16 Carlson KJ amp Skochelak SE (1998) What do women want in a doctor In Textbook of Womenrsquos Health (Ed by LA Wallis) pp 33ndash38 Lippincott-Raven Philadelphia

17 Byrt R Lomas C Gardiner G amp Lewis D (2001) Working with women in secure environments Journal of Psychosocial Nursing and Mental Health Services 3942ndash50

18 Gise LH (1998) Medically unexplained physical symptoms In Textbook of Womenrsquos Health (Ed by LA Wallis) pp 849ndash856 Lippincott-Raven Philadelphia

19 Epworth Hospital Endometriosis Association (Vic) Deakin University Understanding and Managing Endometriosis [WWW document] URL httpwwwepworthorgaudaysurgeryEndoBro_webpdf

20 Epworth Hospital Endometriosis Association (Vic) School of Nursing Deakin University Preparing for a Laparoscopy [WWW document] URL httpwwwepworthorgaudaysurgeryLapBro_webpdf



27


201

H Cox

et al

bull

Endometriosis

Psychological distress involving emotions such asfear anger and depression affects many endometriosissufferers In spite of this there is an absence of pub-lished work that examines the psychosocial impact ofendometriosis

56

The disease is also costly in terms ofits adverse effects on womenrsquos quality of life and sucheconomic measures as lost work days and reducedproductivity

7

One of the most puzzling features of this disorder isthat the severity of the disease can vary greatly Symp-toms can be so severe that daily living is extremelydifficult

11

Primary symptoms include dysmenorrhoeadyspareunia generalized pelvic discomfort and painwhich may permeate the lower back or inner leg

12

Pain-ful bowel movements at the time of menses are a lesscommon but quite specific symptom Also there is nodoubt that as a result of damage to the tubes and ova-ries endometriosis often results in infertility

13

Addingto the perplexity endometriosis can also be asymptom-atic The majority of women suffer symptoms that aresomewhere in between

14

Diagnosing endometriosis can be extremely difficultnot only because severity of the disease does not alwayscorrelate with the amount of pain but also because ofthe numerous possible causes of its common presentingsymptoms such as pelvic pain or infertility Endometri-osis has the ability to mimic a host of other disordersAs a result even though the symptoms may lead a doc-tor to suspect endometriosis a true diagnosis can onlybe confirmed through direct observation At present nosimple non-evasive technique is available for diagnosingthe disease Laparoscopy remains the definitive way todiagnose endometriosis

10

The laparoscopic procedure iswhen a telescope with an illuminated optical system isinserted into the abdomen through a small incision nearthe umbilicus

Although there are several treatment options thereis no cure

1014

Over the past decade a number ofstudies have indicated that both medical and surgicaltreatments appear to have limited long-termeffects

710

Of those that are considered successfulthere is no evidence to suggest that treatment of thedisease alone improves infertility

12

Overall there isno favoured treatment of choice for endometriosisnor a reliable diagnostic procedure to predict treat-ment outcome

15

Womenrsquos dissatisfaction with traditional models andsystems of care has been widely articulated

1617

Therole of women as the major users of health care ser-vices as well as the principal decision-makers in seek-ing care for themselves as well as family members isnow well recognized

18

To improve the process of carefor women a greater understanding of what womenbring to the medical encounter needs to be recognizedWomenrsquos experiences of endometriosis should be com-municated not only to the practitioner but also to otherwomen

Because of the obscurity of the disease for bothpatient and practitioner a need has been identified toraise the awareness of endometriosis This in conjunc-tion with anecdotal evidence from members of theEndometriosis Association (Victoria) that endometrio-sis is often ignored or not taken seriously promptedthe Endometriosis Association in conjunction with theDeakinEpworth Centre for Clinical Nursing Researchto undertake the current study The objective of ourinvestigation was to obtain information from womenwho have experienced endometriosis and laparoscopyin order to (a) identify and meet the informationneeds of women experiencing endometriosis and (b)develop strategies to raise the awareness ofendometriosis

Method

A questionnaire with open and closed questions draw-ing both quantitative and qualitative data was devel-oped to understand better the experiences andinformation needs of women with endometriosis Thesurvey was divided into five sections diagnosisendometriosis laparoscopy managing at home andgeneral comments Surveys were sent to a total of 1031participants Of these 481 were patients of theEpworth Endometriosis Centre and 550 were eithermembers of the Endometriosis Association (Vic) orwomen who had been in contact with the Associationin the 3 months before the questionnaire distributionTwo hundred and fifty-nine questionnaires werereturned lsquoaddress unknownrsquo and 34 were returnedincomplete the remaining 465 completed surveys com-prised the total sample A response rate of 65 wasachieved

Endometriosis

bull

H Cox

et al

202


27





n

=


n

=


c

=

33 SD

=


Results


Diagnosis






also






27


203

H Cox

et al

bull

Endometriosis


Endometriosis


n

=





book


1




n

=


n

=


n

=


n

=


n

=


n

=


n

=


n

=

29)

Laparoscopy


Endometriosis

bull

H Cox

et al

204


27



laparoscopy (

n

=


n

=

311)


and



n

=






Table 1





n

=




27


205

H Cox

et al

bull

Endometriosis




Managing at home



General comments




No-one listens


Endometriosis

bull

H Cox

et al

206


27










Table 2





n

=




27


207

H Cox

et al

bull

Endometriosis


Discussion



7







Endometriosis

bull

H Cox

et al

208


27








19


20



Conclusion


Acknowledgments


References























Endometriosis

bull

H Cox

et al

202


27





n

=


n

=


c

=

33 SD

=


Results


Diagnosis






also






27


203

H Cox

et al

bull

Endometriosis


Endometriosis


n

=





book


1




n

=


n

=


n

=


n

=


n

=


n

=


n

=


n

=

29)

Laparoscopy


Endometriosis

bull

H Cox

et al

204


27



laparoscopy (

n

=


n

=

311)


and



n

=






Table 1





n

=




27


205

H Cox

et al

bull

Endometriosis




Managing at home



General comments




No-one listens


Endometriosis

bull

H Cox

et al

206


27










Table 2





n

=




27


207

H Cox

et al

bull

Endometriosis


Discussion



7







Endometriosis

bull

H Cox

et al

208


27








19


20



Conclusion


Acknowledgments


References

























27


203

H Cox

et al

bull

Endometriosis


Endometriosis


n

=





book


1




n

=


n

=


n

=


n

=


n

=


n

=


n

=


n

=

29)

Laparoscopy


Endometriosis

bull

H Cox

et al

204


27



laparoscopy (

n

=


n

=

311)


and



n

=






Table 1





n

=




27


205

H Cox

et al

bull

Endometriosis




Managing at home



General comments




No-one listens


Endometriosis

bull

H Cox

et al

206


27










Table 2





n

=




27


207

H Cox

et al

bull

Endometriosis


Discussion



7







Endometriosis

bull

H Cox

et al

208


27








19


20



Conclusion


Acknowledgments


References























Endometriosis

bull

H Cox

et al

204


27



laparoscopy (

n

=


n

=

311)


and



n

=






Table 1





n

=




27


205

H Cox

et al

bull

Endometriosis




Managing at home



General comments




No-one listens


Endometriosis

bull

H Cox

et al

206


27










Table 2





n

=




27


207

H Cox

et al

bull

Endometriosis


Discussion



7







Endometriosis

bull

H Cox

et al

208


27








19


20



Conclusion


Acknowledgments


References

























27


205

H Cox

et al

bull

Endometriosis




Managing at home



General comments




No-one listens


Endometriosis

bull

H Cox

et al

206


27










Table 2





n

=




27


207

H Cox

et al

bull

Endometriosis


Discussion



7







Endometriosis

bull

H Cox

et al

208


27








19


20



Conclusion


Acknowledgments


References























Endometriosis

bull

H Cox

et al

206


27










Table 2





n

=




27


207

H Cox

et al

bull

Endometriosis


Discussion



7







Endometriosis

bull

H Cox

et al

208


27








19


20



Conclusion


Acknowledgments


References

























27


207

H Cox

et al

bull

Endometriosis


Discussion



7







Endometriosis

bull

H Cox

et al

208


27








19


20



Conclusion


Acknowledgments


References























Endometriosis

bull

H Cox

et al

208


27








19


20



Conclusion


Acknowledgments


References










































