International Journal of Nursing Practice

2003

9

2ndash9

Blackwell Science LtdOxford UKIJNInternational Journal of Nursing Practice1322-71142002 Blackwell Science Asia Pty Ltd

91February 2003396

Focus group study of endometriosisH Cox et al

101046j1322-7114200200396xOriginal Article29BEES SGML

Correspondence Professor Helen Cox Centre for Clinical Nursing

Research Epworth Hospital 89 Bridge Road Richmond Victoria

3121 Australia Email helencoxdeakineduau

R E S E A R C H PA P E R

Focus group study of endometriosis

Struggle loss and the medical merry-go-round

Helen Cox RN PhD

Chair of Contemporary Nursing Deakin UniversityEpworth Hospital Richmond Victoria Australia

Lorraine Henderson RN

Member Endometriosis Association (Vic) IncVictoria Australia

Natalie Andersen RN

Clinical Nurse Specialist Day Surgery Unit Epworth HospitalRichmond Victoria Australia

Glenda Cagliarini

Student nurse and member Endometriosis Association (Vic) IncVictoria Australia

Chantal Ski PhD

Research Fellow DeakinEpworth Centre for Clinical Nursing Research Epworth Hospital Richmond Victoria Australia

Accepted for publication July 2002

Cox H Henderson L Andersen N Cagliarini G Ski C

International Journal of Nursing Practice

2003

9

2ndash9

Focus group study of endometriosis Struggle loss and the medical merry-go-round

Women with endometriosis experience a range of problems for which they may or may not be adequately supported Thispaper reports on one aspect of a study conducted at the Epworth Hospital Melbourne to identify the information needsof women facing laparoscopy for endometriosis A number of focus groups were conducted that provided women with aforum for communicating their experiences of endometriosis and laparoscopy The findings include the experiences of 61women who described the lack of support the struggles and the losses involved in living with endometriosis By far theworst experience that these women described was the encounter with health professionals and the ways in which theirsymptoms were trivialised and dismissed There is a great deal for nurses to learn about the experience of living withendometriosis if they are to support women with this chronic illness in their search for well-being

Key words

endometriosis trivialisation delayed diagnosis loss taking control

INTRODUCTION

Endometriosis is a chronic condition of as yet undeter-mined origin It is the second most common gynaecolog-ical condition affecting approximately 10 of women in

their menstruating years It is one of the leading causes ofinfertility in women over the age of 25 and it is believedthat approximately 30ndash40 of infertile women have somedegree of endometriosis

1

Nurses encounter women withendometriosis in a variety of settings community healthcentres schools GP clinics day surgery units and surgicalwards This paper describes a study undertaken by staff ofEpworth Hospital Deakin University and the Endometri-osis Association (Vic) which explored the information

Focus group study of endometriosis 3

needs of women having laparoscopy for endometriosis Inparticular the paper describes the experiences that thesewomen went through in their journey to be diagnosed andtreated appropriately rather than focusing on the laparos-copy experience itself The purpose of this paper is toincrease awareness of womenrsquos experiences of endometri-osis and the lack of support for women sufferers A starkpicture of struggle and loss trivialisation and dismissal ispresented Endometriosis is depicted as a chronic condi-tion that doctors and nurses do not know enough aboutand do not manage well Although the information pre-sented is most pertinent to doctors there are importantmessages for nurses also Where nurses aim to give holisticcare an understanding of the experience of living withthis chronic illness is vital

Background

In endometriosis tissue that is usually found lining theuterus is found elsewhere generally in the pelvic cavityThis tissue responds to reproductive hormone cycleseventually causing irritation inflammation and scarringEndometriosis can cause a variety of symptoms particu-larly pain and is often quite debilitating

2

Diagnosis ofendometriosis often takes a long time The EndometriosisAssociation (Vic) conducted a survey of 750 women in1989 and found that the average time between symptomonset and diagnosis was over 6 years (Wood R unpubldata 1992) The survey results indicated that the delaywas partly attributable to difficulty with diagnosis butthat there was also an attitude among doctors of not takingwomenrsquos complaints of symptoms such as period painseriously Investigations aimed at establishing a physicalcause of such pain are usually delayed and prolonged Inaddition endometriosis is sometimes not considered tobe a priority health care issue by the medical professiondespite the high emotional and physical impact it has onwomen It is not seen as a high acuity problem

The published reports on endometriosis paint a pictureof a disease that women experience as problematic in anumber of areas of their lives A national survey of 4000members of the National United Kingdom EndometriosisSociety found long delays to diagnosis (7 years on aver-age) lives of chronic pain and multiple laparoscopies fortreatment distress due to infertility and loss of careerand relationships

3

The findings suggest a lack both of GPknowledge of endometriosis and of empathy for sufferersIn another study that examined GP knowledge attitudesand views on diagnosis of endometriosis knowledge gaps

about possible symptoms were uncovered and it wasfound that older GPs have less knowledge of the conditionthan do younger ones

4

General practitioners themselvesreadily agree that they lack knowledge and that they expe-rience difficulty diagnosing a disease where the symptomsare difficult to distinguish from other diseases

In a study by Carlton womenrsquos experience with GPswas varied

3

The study found that once women soughthelp for their symptoms (i) 41 were referred to a spe-cialist within 6 months because the GP suspectedendometriosis (ii) 16 were referred to a specialistwithin 6 months to 2 years and (iii) 16 had no diagnosisafter 2 years Of the 70 who told their GP that they sus-pected endometriosis 26 were referred on to a special-ist immediately In other words the GP listened to theirreasons and thought them legitimate Fifteen per centwere referred reluctantly and a further 18 were notreferred on because the GP disagreed with their self-diagnosis Of concern is that 7 were completely ignoredby their GP

Similar experiences have been reported in NewZealand

5

and in the USA

6

with the persistent somatisationof endometriosis also having been reported in the latterSomatisation occurs when a patient is considered to haveunderlying psychological factors or conflicts that cause thesymptoms of a disease rather than to have a true physicaldisease According to the

Diagnostic and Statistical Manual

of Mental Disorders

(DSM-4R)

7

somatisation primarilyaffects women Ballweg wrote lsquoan article written by psy-chiatrists for the

Journal of Family Practice

states that ldquoonly a1 h outpatient evaluation is required to make the diagnosis[of somatisation]rdquorsquo The result is that a patient is referred toa psychiatrist or psychologist practitioners as Ballwegnotes who are lsquoeven less educated about endometriosisthan the referring physicianrsquo

6

In respect to GP empathy women in the New Zealandstudy

5

did not believe doctors are attuned to how the dis-tress is experienced why it is of importance and how itaffects their lives Participants perceived this results pri-marily from the doctorsrsquo preoccupation with a largely bio-medical conception of the disease

5

When women are eventually diagnosed withendometriosis their struggle often continues It is oftenthe case that the more they discover about this disease themore they fear that they will never be pain-free be fertileor have a normal life as no treatment is entirely satisfac-tory and the disease has a high recurrence rate Such fearsare not unjustified Studies have indicated that approxi-

4 H Cox

et al

mately 20 of women will have a recurrence of theirsymptoms of endometriosis within 12 months of treat-ment regardless of the type of treatment received and afurther 50 will have a recurrence within 5 years

89

Thelonger a woman must deal with the symptoms of andtreatment for endometriosis the more likely it is she willfeel overwhelmed and powerless

9

The current study

Endometriosis is diagnosed by investigative laparoscopyand one of the treatment options is operative laparoscopyBoth investigative and treatment laparoscopies are gener-ally done in day surgery units The Day Surgery Unit atEpworth is increasing activity at a rate of 20 per yearwith a throughput that was 150 higher in 2000 than itwas in 1995 Over the 12 months of 2000 685 patientsper month received treatment

10

Gynaecology is one ofthe major specialty areas using the Day Surgery UnitMonash IVF operate from Epworth and Epworth also runsan Endometriosis Clinic in conjunction with Endometri-osis Association (Vic) Inc As a direct consequence theDay Surgery Unit has increasing numbers of womenundergoing gynaecological procedures for endometriosisThey form a growing consumer group

METHODS

This study used both qualitative and quantitative methodswith a survey and focus group designed to determine con-sumer needs for information related to day surgery forendometriosis-related problems A total of 1031 surveyswere sent to women who had been diagnosed withendometriosis through the Endometriosis Association(Vic) Inc membership and the Epworth EndometriosisCentre database A 65 response rate was achieved Ofthe survey respondents 61 women also contributed tofocus groups either in person or by telephone (for thosewho lived interstate or in rural locations where there wereinsufficient numbers for a group meeting but wherewomen were adamant that they wanted their voices heardin this matter) Focus group outcomes are reported in thispaper

Focus groups

Five focus groups were held to further explore issuesidentified in the survey Women were invited to add theiropinions regarding what information they would like toreceive or contribute about endometriosis including butnot restricted to (i) the nature of the disease (ii) their

experience of living with endometriosis and (iii) theirexperience with diagnosis and treatment

The study leader Helen Cox acted as facilitator foreach focus group At each of the focus groups a memberof the Study Steering Committee representing theEndometriosis Association was present as a support per-son It became evident at the first focus group that thewomen had undergone quite traumatic experiences somebecame distressed during discussions and two requireddebriefing following the meeting The telephone inter-views in particular had to be managed with a great dealof sensitivity and opportunities for debriefing wereoffered at the end of the meetings and telephone calls tobe sure that no one was left unsupported

The focus groups were audiotaped and transcribed ver-batim In addition the study leader took notes duringeach group and kept a diary for later reflection Tapes werelistened to several times and transcripts read and re-readby the study leader Themes were identified and thenchecked to be sure they had emerged from the data ratherthan been forced on the data The transcripts were thenre-read for illustrations of the themes At the end of thisprocess the data analysis was given to the other membersof the study team who had attended the focus groups sothat they could comment and was also mailed to the par-ticipants for validation The majority of these women indi-cated that the thematic analysis was true to theirexperience

RESULTS AND DISCUSSION

The demographics of the focus groups are provided inTable 1 It needs to be stated at the outset that the womenin the focus groups may represent a skewed sample as allhad experienced a long history of struggle both with thedisease and with treatment Many who were members ofthe Endometriosis Association joined because of theirneed for ongoing support and advice It may be that thosewho chose not to participate in focus groups did not sharethis experience of trauma Nevertheless the results of thesurvey along with the experiences of the women in thefocus groups highlight a number of problems Theseproblems are discussed under the three key themes thatarose from the data lsquoLiving with endometriosisrsquo lsquoThedoctor trailrsquo and lsquoTaking controlrsquo

Living with endometriosis

Although this study had a particular focus on day surgerythe majority of women in the focus groups wanted to

Focus group study of endometriosis 5

talk about what it was like to live with endometriosisbroadly Indeed each focus group could have run formuch longer such was the need of the women to tell ofthe trauma distress and anger of not being taken seri-ously Two subthemes could be identified under the themeof living with endometriosis lsquoThe long strugglersquo andlsquoDepressionrsquo

The long struggle

Most of the women had been living with endometriosisfor many years In some cases there was a significant gap(ie 38 years average from survey data) between theonset of symptoms and seeking help Some of the womenexplained that their experience of pap smears had beenextremely painful and made them reluctant to seek med-ical advice that would no doubt require a pelvic examina-tion Others said that they found intercourse painful andwere embarrassed to discuss such personal issues withanyone Some said they guessed that they might haveendometriosis but when they read a bit about it theybecame scared and decided they did not want to knowYet others had been convinced by their mothers aunts

teachers or others that painful periods were normal andno one had made any association with other symptomsthey were experiencing to connect them to a biggerpicture

Many of the women had experienced symptoms asadolescents that is in the 10ndash16 years age range Theyhad been through the struggle of the doctor trail ofparents who were unsympathetic and who felt that thiswas lsquoa womanrsquos lotrsquo particularly if their mother andgrandmothers had experienced painful periods also Thesymptoms of endometriosis pervaded these womenrsquoslives affecting everything from their work to relationshipsto future plans for conception Women told of losing jobsbecause of having to take too much sick leave A numberof women reported marriage breakdown because it was sohard for partners to live with the constancy of the diseaseMost women indicated they struggled to lead normallives and not to let this disease take over their sense ofself

Depression

A serious problem for many sufferers of endometriosis isthe development of depression One young woman toldthe group that she had been diagnosed as suicidal depres-sive and others had thought of suicide at some time Manywomen indicated that the struggle is compounded byworkplace discrimination issues and by being judged ahypochondriac by family members lsquoalways ill with some-thingrsquo Marriage breakdown and loss of partners andfriends is serious The majority of sufferers indicated theyfelt alone in a hostile world since the health professionalswho could legitimise their symptoms were dismissive ofthem and it seems that it seems that the damage to self-esteem done by the disbelief of health-care professionals isquite significant A large number of the women reportedfeeling worthless and hating being compared to otherwomen who are able to manage monthly periods and geton with life

Those women whose endometriosis had rendered theminfertile indicated they resented the judgement thatwomen with no children are not real women that theyhave failed in lifersquos purpose One woman said she feltangry at the current Australian Federal Governmentrsquoslsquobaby bonusrsquo for women with new babies stating that hertax is rewarding women for doing the very thing that hasbeen taken from her She considered that Governmentresources should also be put to use in the area of researchand treatment of endometriosis

Table 1

Focus group demographics (

n

=

61)

Variable

n

Age

20ndash24 5

25ndash29 10

30ndash34 19

35ndash39 9

40ndash44 9

45ndash49 6

50ndash54 2

55ndash59 0

60ndash64 1

Location

Victoria

City 44

Regional 4

Rural 4

Interstate

Qld 1

NSW 6

SA 2

6 H Cox

et al

The doctor trail

Almost every woman spoke at length of the years spentlsquodoctor shoppingrsquo to locate a doctor who would be sym-pathetic to her plight who would listen and believe herThe subthemes that arose under this main theme were lsquoGPtraumarsquo and lsquoThe specialistnon-specialist gynaecologistrsquo

GP trauma

Four women spoke about dealings with sensitive GPs Thiswas unusual because in the main women spoke of diffi-culties encountered with GPs One woman told of the 12-year trail she had been on before she found a GP whowould take her complaints seriously and not dismiss hersymptoms as period pain and something she just had toput up with Another told of the more than 100 GPs shehad visited in the same search and always she said sheended up feeling lsquothe victim of their disbelief and trivial-isationrsquo Almost all women had experienced doctors whotold them they were lsquotoo young to have endometriosisrsquoOne woman related a history of severe pain even while inearly high school Her GP told her repeatedly that it waslsquoin my headrsquo and it was not until she was 21 years of agethat she was diagnosed with endometriosis Sometimeswomen recalled the questions that they had been askedand their impression was that GPs did not ask the rightquestions so that the reality of their situation was notuncovered Some women expressed surprise that thefemale GPs they had consulted were not any more helpfulthan the male GPs One female GP who knew that herpatient had been diagnosed and treated for endometriosissaid when told the symptoms were coming back that thiswas lsquohighly unlikelyrsquo Indeed the patientrsquos endometriosishad returned and further surgery was required

Women told of how doctors refused to give referralsbecause they simply did not believe them In one instancea young woman whose mother had endometriosis sug-gested to her GP that she too might have symptoms of thedisease She was told it was highly unlikely and her GPwas reluctant to refer her on to a specialist She was toldlsquoletrsquos see what happensrsquo and she put up with her symp-toms for many years before finally insisting on beingreferred to a specialist The specialist diagnosed her withstage 4 endometriosis and told her that this meantendometriosis had lsquoglued her insides together in a chaoticmessrsquo with the result that she was required to undergoquite radical surgery

Another young woman who had complained of symp-toms for 2 years was told to settle into her new marriage

get her life together and come back in 12 months Thislsquogetting married and having kidsrsquo attitude to solvinggynaecological problems appears widespread among GPsIf there are benefits of pregnancy for women withendometriosis these were not explained to participants ofthe focus groups who indicated they felt fobbed off Par-ticipants expressed that they sensed there is an attitudinalproblem that GPs generally have toward lsquowomenrsquosproblemsrsquo

The specialistnon-specialist gynaecologist

Whether or not they had undergone a long journey to bereferred to a specialist the majority of women from thefocus groups did not necessarily find their problems withdoctors to be over In many cases gynaecologists them-selves had no specialised knowledge of endometriosisOne woman said that her surgeon lsquoburned bits ofendometriosisrsquo during laparoscopy but did not persistwith the diathermy considering it to be too severe a treat-ment However the gynaecologist did not refer thewoman to an expert so there was no further follow up ofthis woman and her persisting symptoms Some of thewomen from the focus groups said they had undergonequite radical surgery without any of it making a differencein the longer term to their physical symptoms and sub-sequent consultations with endometriosis specialists leftthem in some doubt that the radical surgery had been theright treatment decision In a number of instances thewomen felt that gynaecologists who did not specialise inendometriosis shared the GPrsquos attitude of dismissing theirsymptoms and trivialising their problems

Some women spoke of the blunt way in which theywere told that they had endometriosis They said thereappeared to be no empathy from some doctors and thewomen indicated that they felt that this was related to thedoctorsrsquo lack of detailed knowledge about the conditionhow severe symptoms can be and the ramifications for thefuture lives of these women and their partners Onewoman who consulted a gynaecologist in a regional areasaid that this gynaecologist a woman told her that herchoice would be lsquoto become a lactating female meno-pausal or turn into a manrsquomdashand this at the age of 19 Shewas given no information and no options and eventuallymoved to the city to try to find help to better manage herlife

Having mentioned these problems the womenrsquos com-ments indicate that there was nowhere near the level ofdiscontent with gynaecologists as there was with GPs

Focus group study of endometriosis 7

Nevertheless it was with great emotion that many of thewomen spoke of finding gynaecologists who had specialistexpertise in endometriosis The relief of being diagnosedand of having someone able to explain their symptomsthe nature of the disease and the treatment options wastremendous and lifted a serious burden from the minds ofthese women

Taking control

Women in the focus groups indicated that they took seri-ously the decision to have an operation and that they likedto be in control of what happened to them when possibleOne woman said that she had no intention of being lsquocut upagainrsquo She indicated that she feared adhesions developingthat would prevent pregnancy and at the time of the focusgroup was intensely focused on her fertility This womanindicated that she felt cheated and was resisting any sug-gestion of succumbing to the disease lsquonormalrsquo treatments(hysterectomy) or anything that might suggest the diseasecould win over her desire to have a child

A number of women who participated in the focusgroups managed despite the odds to take back controlof their lives These women indicated that this was along and difficult road and that they recognised not allwomen would be able to achieve this These women alsoindicated the personal struggle they had had to go throughto gain strength for battle and that they wanted womenwho followed them not to have to learn to be strongthrough such adversity The sub themes in this categorywere lsquoUndoing the damagersquo lsquoSetting goalsrsquo and lsquoBecomingassertiversquo

Undoing the damage

The damage that occurred through GPs not listening nottaking symptoms seriously trivialising these womenrsquosexperiences and telling young women that their symp-toms were lsquoin their headsrsquo was deep and serious Fromwomenrsquos accounts the emotional backlash seemed to takea great deal of time and effort to undomdashif indeed it wasever undone The women who had learnt to take controlreported that they had done so because they had no choicein the end They had to force doctors to listen force doc-tors to refer them to the gynaecologist of their ownchoice force employers to be just in their dealings withthem and force their partners and friends to listen and tobe compassionate They got angry Having decided thatthey would no longer put up with being treated badlythey sought information Armed with as much informa-

tion as possible they then made their demands andinsisted on being heard Where they were still not listenedto they switched GPs or specialists they demanded goodcare and kept up the search until they got what theyneeded A number of women said that after locating theright consultant they returned to their GP only forscripts They were clear about what they wanted askedfor it and leftmdashthey never discussed what was happeningin their care or treatment having decided that there wasno point in consulting a GP for this aspect of their healthcare

Setting goals

Each of the women in the focus groups indicated that sheset a particular goal or goals for herself For most themain goal was to be drug free but at the same time receivegood pain management Another woman set her goal asgetting off lsquothe medical roundaboutrsquo she indicated thatshe did this through natural therapies diet and spiritualhealing She said that endometriosis had destroyed herrelationships and changed her life and that she could seeongoing surgery would produce more of the same Whendoctors indicated that she needed radical surgery tolsquoremove everythingrsquo she decided that she had hadenough At the time of the focus group she stated thatmost of her symptoms had subsided and she was manag-ing life well in general

Becoming assertive

Analysis of the womenrsquos responses showed that one of thethings that started women on the road to assertiveness wasrecording their symptoms locating their patterns andrealising that their symptoms were cyclical and had a basisin physiology Their statements revealed how they firstbegan to believe what they were feeling and started to rea-lise that they did really know their own bodies and couldtrust the judgements that they were making about whatwas happening to them This led the women to startrejecting what they were being told by those who weredismissive of them They said that now they could nametheir experience and that previously they were being bul-lied and further explained that emotionally they grewstronger with this knowledge

The women expressed that realising they were ulti-mately in charge was liberating This is not to say that lifehad become easier but that they no longer put up withtreatment that was less than they required and demandedAn outcome of this in the focus groups was the recogni-

8 H Cox

et al

tion by women that they could be responsible for some ofthe lsquospreading of the wordrsquo ensuring increased publicawareness and encouraging young women to seek helprather than thinking that their pain was period pain andtherefore lsquonormalrsquo Some women spoke of how they couldplay a role in educating their GP by passing on usefulinformation they had located thus helping other womento get better care

DISCUSSION

The information gleaned from the five focus groups high-lights a number of issues for women with endometriosisThese can be grouped as

1

The difficulty in locating information aboutendometriosis and the need for information not only forwomen who have or might have endometriosis but forpartners employers and others

2

Lack of knowledge and negative attitudes of GPs andnon-specialist gynaecologists and the resultant traumaand depression experienced by the women

3

The difficulty of learning to take control of their livesand be assertive in relation to communicating with healthcare professionals

The information given by the women in this study pre-sents a stark picture of marginalisation loss struggle andgrief and it is a picture that is similar for women in othercountries Studies in the United Kingdom

3

New Zealand

5

and the USA

6

have found that women experienced(i) delays in diagnosis (ii) chronic pain (iii) multiplelaparoscopies and infertility and (iv) loss of career andrelationships

Other studies have reported similar experiencesregarding GP knowledge of and attitudes towardsendometriosis The somatisation experienced by womenin Ballwegrsquos study was perhaps more extreme than thatexperienced by women in the present study but the triv-ialisation and dismissal of their problems was the sameand sometimes occurred for similar reasons

4

In addition GPsrsquo empathy towards sufferers has beencalled into question in this study Montague and Woodfound that only a minority of doctors held negativewoman-blaming attitudes towards patients withendometriosis with most demonstrating a sympatheticunderstanding of the broad range of problems and theirimplications for women with the disease

4

It is worth reit-erating since this is not what women in this studyreported the possible skewed nature of the compositionof the focus groups Women who had experienced signif-

icant problems with doctors may well have been themajority of those prepared to attend the focus groups spe-cifically because they wanted to voice their frustrationand they may have been a minority in respect of therespondents to the survey

Much of what was uncovered in these focus groups canbe alleviated with knowledge understanding and compas-sion The information presented in this paper is importantfor nurses in that it will help them to gain an understand-ing of what many women with endometriosis go throughin their journey to diagnosis and treatment It is hopedthat such understanding will encourage nurses to becompassionate when dealing with these women in anycontext

Future directions

The information collated from the focus groups stronglysuggests that we have only scratched the surface of difficultand at present apparently unavoidable experiences for anumber of women The women in this study were ada-mant about the need for health professionals to be bettereducated about endometriosis and for the production anddissemination of information not only to women withendometriosis but also to teachers employers partnersand family members

The researchers have taken a number of positive stepsin response to the findings of this study Among these are

1

The production of a booklet about endometriosis tobe distributed via the Endometriosis Association (Vic)

2

Journal articles written to target GPs andgynaecologists

3

Information distributed through GP divisionnewsletters

4

Targeted conference presentations to provide feedbackof results to relevant professional groups and to consumergroups

Further research studies are planned particularly inthe areas of quality of life and developing partneremployer knowledge about endometriosis and empathytowards sufferers

ACKNOWLEDGEMENTS

The Commonwealth Department of Health and AgedCare Consumer Focus Strategy aimed to strengthen therole of consumers in health service planning deliverymonitoring and evaluation To document good practice inconsumer involvement and to demonstrate promote andrefine resources developed under the Strategy a series of

Focus group study of endometriosis 9

small grants were provided to local partnerships of con-sumers and health providers

This study was funded by the Department of Healthand Aged Care as part of the Consumer and Provider Part-nerships in Health (CAPPS) Project series which weredesigned to further develop the evidence base underpin-ning effective consumer participation

The authors also acknowledge Margo Sheahan theCare Evaluation Coordinator at Epworth Hospital andthe members of the CAPPs Study Steering Committee inparticular Ms Terri Punshon the Facilitator and the Exec-utive of Epworth Hospital who supported this study in itsentirety

REFERENCES

1 Endometriosis Association (Vic)

What Is Endometriosis

Melbourne Endometriosis Association (Vic) 2000[Accessed July 2001] Available at httpwwwendometriosisorgausavvyendositewhatisendo

2 Zreik

T

Olive

D

Pathophysiology The biologic principles

of disease

Obstetrics and Gynaecology Clinics of North America

1997

24

259ndash2683 Carlton

D

Awareness of endometriosis

Practice Nurse

1996

12

514ndash5154 Montague

M

Wood

R

Diagnosing endometriosis GPrsquosknowledge attitudes and views on diagnosis

Report to the

Department of Health and Family Services General Practice Eval-

uation Program 1997

GPEP project 1997 3585 Grace

V

Problems women patients experience in the med-ical encounter for chronic pelvic pain a New Zealandstudy

Health Care for Women International

1995

16

509ndash519

6 Ballweg

M

Blaming the victim

Obstetrics and Gynaecology

Clinics of North America

1997

24

441ndash4537 American Psychiatric Association

Diagnostic and Statistical

Manual of Mental Disorders

4th edn Washington AmericanPsychiatric Association 2000

8 Henderson

L

Wood

R

Explaining Endometriosis

Mel-bourne Endometriosis Association (Vic) 2000

9 Garner

C

Coping with endometriosis

Office Nurse

1996

9

14ndash2110 Epworth Hospital Annual Report (2000) Melbourne

Epworth Hospital 2001

4 H Cox

et al

mately 20 of women will have a recurrence of theirsymptoms of endometriosis within 12 months of treat-ment regardless of the type of treatment received and afurther 50 will have a recurrence within 5 years

89

Thelonger a woman must deal with the symptoms of andtreatment for endometriosis the more likely it is she willfeel overwhelmed and powerless

9

The current study

Endometriosis is diagnosed by investigative laparoscopyand one of the treatment options is operative laparoscopyBoth investigative and treatment laparoscopies are gener-ally done in day surgery units The Day Surgery Unit atEpworth is increasing activity at a rate of 20 per yearwith a throughput that was 150 higher in 2000 than itwas in 1995 Over the 12 months of 2000 685 patientsper month received treatment

10

Gynaecology is one ofthe major specialty areas using the Day Surgery UnitMonash IVF operate from Epworth and Epworth also runsan Endometriosis Clinic in conjunction with Endometri-osis Association (Vic) Inc As a direct consequence theDay Surgery Unit has increasing numbers of womenundergoing gynaecological procedures for endometriosisThey form a growing consumer group

METHODS

This study used both qualitative and quantitative methodswith a survey and focus group designed to determine con-sumer needs for information related to day surgery forendometriosis-related problems A total of 1031 surveyswere sent to women who had been diagnosed withendometriosis through the Endometriosis Association(Vic) Inc membership and the Epworth EndometriosisCentre database A 65 response rate was achieved Ofthe survey respondents 61 women also contributed tofocus groups either in person or by telephone (for thosewho lived interstate or in rural locations where there wereinsufficient numbers for a group meeting but wherewomen were adamant that they wanted their voices heardin this matter) Focus group outcomes are reported in thispaper

Focus groups

Five focus groups were held to further explore issuesidentified in the survey Women were invited to add theiropinions regarding what information they would like toreceive or contribute about endometriosis including butnot restricted to (i) the nature of the disease (ii) their

experience of living with endometriosis and (iii) theirexperience with diagnosis and treatment

The study leader Helen Cox acted as facilitator foreach focus group At each of the focus groups a memberof the Study Steering Committee representing theEndometriosis Association was present as a support per-son It became evident at the first focus group that thewomen had undergone quite traumatic experiences somebecame distressed during discussions and two requireddebriefing following the meeting The telephone inter-views in particular had to be managed with a great dealof sensitivity and opportunities for debriefing wereoffered at the end of the meetings and telephone calls tobe sure that no one was left unsupported

The focus groups were audiotaped and transcribed ver-batim In addition the study leader took notes duringeach group and kept a diary for later reflection Tapes werelistened to several times and transcripts read and re-readby the study leader Themes were identified and thenchecked to be sure they had emerged from the data ratherthan been forced on the data The transcripts were thenre-read for illustrations of the themes At the end of thisprocess the data analysis was given to the other membersof the study team who had attended the focus groups sothat they could comment and was also mailed to the par-ticipants for validation The majority of these women indi-cated that the thematic analysis was true to theirexperience

RESULTS AND DISCUSSION

The demographics of the focus groups are provided inTable 1 It needs to be stated at the outset that the womenin the focus groups may represent a skewed sample as allhad experienced a long history of struggle both with thedisease and with treatment Many who were members ofthe Endometriosis Association joined because of theirneed for ongoing support and advice It may be that thosewho chose not to participate in focus groups did not sharethis experience of trauma Nevertheless the results of thesurvey along with the experiences of the women in thefocus groups highlight a number of problems Theseproblems are discussed under the three key themes thatarose from the data lsquoLiving with endometriosisrsquo lsquoThedoctor trailrsquo and lsquoTaking controlrsquo

Living with endometriosis

Although this study had a particular focus on day surgerythe majority of women in the focus groups wanted to

Focus group study of endometriosis 5

talk about what it was like to live with endometriosisbroadly Indeed each focus group could have run formuch longer such was the need of the women to tell ofthe trauma distress and anger of not being taken seri-ously Two subthemes could be identified under the themeof living with endometriosis lsquoThe long strugglersquo andlsquoDepressionrsquo

The long struggle

Most of the women had been living with endometriosisfor many years In some cases there was a significant gap(ie 38 years average from survey data) between theonset of symptoms and seeking help Some of the womenexplained that their experience of pap smears had beenextremely painful and made them reluctant to seek med-ical advice that would no doubt require a pelvic examina-tion Others said that they found intercourse painful andwere embarrassed to discuss such personal issues withanyone Some said they guessed that they might haveendometriosis but when they read a bit about it theybecame scared and decided they did not want to knowYet others had been convinced by their mothers aunts

teachers or others that painful periods were normal andno one had made any association with other symptomsthey were experiencing to connect them to a biggerpicture

Many of the women had experienced symptoms asadolescents that is in the 10ndash16 years age range Theyhad been through the struggle of the doctor trail ofparents who were unsympathetic and who felt that thiswas lsquoa womanrsquos lotrsquo particularly if their mother andgrandmothers had experienced painful periods also Thesymptoms of endometriosis pervaded these womenrsquoslives affecting everything from their work to relationshipsto future plans for conception Women told of losing jobsbecause of having to take too much sick leave A numberof women reported marriage breakdown because it was sohard for partners to live with the constancy of the diseaseMost women indicated they struggled to lead normallives and not to let this disease take over their sense ofself

Depression

A serious problem for many sufferers of endometriosis isthe development of depression One young woman toldthe group that she had been diagnosed as suicidal depres-sive and others had thought of suicide at some time Manywomen indicated that the struggle is compounded byworkplace discrimination issues and by being judged ahypochondriac by family members lsquoalways ill with some-thingrsquo Marriage breakdown and loss of partners andfriends is serious The majority of sufferers indicated theyfelt alone in a hostile world since the health professionalswho could legitimise their symptoms were dismissive ofthem and it seems that it seems that the damage to self-esteem done by the disbelief of health-care professionals isquite significant A large number of the women reportedfeeling worthless and hating being compared to otherwomen who are able to manage monthly periods and geton with life

Those women whose endometriosis had rendered theminfertile indicated they resented the judgement thatwomen with no children are not real women that theyhave failed in lifersquos purpose One woman said she feltangry at the current Australian Federal Governmentrsquoslsquobaby bonusrsquo for women with new babies stating that hertax is rewarding women for doing the very thing that hasbeen taken from her She considered that Governmentresources should also be put to use in the area of researchand treatment of endometriosis

Table 1

Focus group demographics (

n

=

61)

Variable

n

Age

20ndash24 5

25ndash29 10

30ndash34 19

35ndash39 9

40ndash44 9

45ndash49 6

50ndash54 2

55ndash59 0

60ndash64 1

Location

Victoria

City 44

Regional 4

Rural 4

Interstate

Qld 1

NSW 6

SA 2

6 H Cox

et al

The doctor trail

Almost every woman spoke at length of the years spentlsquodoctor shoppingrsquo to locate a doctor who would be sym-pathetic to her plight who would listen and believe herThe subthemes that arose under this main theme were lsquoGPtraumarsquo and lsquoThe specialistnon-specialist gynaecologistrsquo

GP trauma

Four women spoke about dealings with sensitive GPs Thiswas unusual because in the main women spoke of diffi-culties encountered with GPs One woman told of the 12-year trail she had been on before she found a GP whowould take her complaints seriously and not dismiss hersymptoms as period pain and something she just had toput up with Another told of the more than 100 GPs shehad visited in the same search and always she said sheended up feeling lsquothe victim of their disbelief and trivial-isationrsquo Almost all women had experienced doctors whotold them they were lsquotoo young to have endometriosisrsquoOne woman related a history of severe pain even while inearly high school Her GP told her repeatedly that it waslsquoin my headrsquo and it was not until she was 21 years of agethat she was diagnosed with endometriosis Sometimeswomen recalled the questions that they had been askedand their impression was that GPs did not ask the rightquestions so that the reality of their situation was notuncovered Some women expressed surprise that thefemale GPs they had consulted were not any more helpfulthan the male GPs One female GP who knew that herpatient had been diagnosed and treated for endometriosissaid when told the symptoms were coming back that thiswas lsquohighly unlikelyrsquo Indeed the patientrsquos endometriosishad returned and further surgery was required

Women told of how doctors refused to give referralsbecause they simply did not believe them In one instancea young woman whose mother had endometriosis sug-gested to her GP that she too might have symptoms of thedisease She was told it was highly unlikely and her GPwas reluctant to refer her on to a specialist She was toldlsquoletrsquos see what happensrsquo and she put up with her symp-toms for many years before finally insisting on beingreferred to a specialist The specialist diagnosed her withstage 4 endometriosis and told her that this meantendometriosis had lsquoglued her insides together in a chaoticmessrsquo with the result that she was required to undergoquite radical surgery

Another young woman who had complained of symp-toms for 2 years was told to settle into her new marriage

get her life together and come back in 12 months Thislsquogetting married and having kidsrsquo attitude to solvinggynaecological problems appears widespread among GPsIf there are benefits of pregnancy for women withendometriosis these were not explained to participants ofthe focus groups who indicated they felt fobbed off Par-ticipants expressed that they sensed there is an attitudinalproblem that GPs generally have toward lsquowomenrsquosproblemsrsquo

The specialistnon-specialist gynaecologist

Whether or not they had undergone a long journey to bereferred to a specialist the majority of women from thefocus groups did not necessarily find their problems withdoctors to be over In many cases gynaecologists them-selves had no specialised knowledge of endometriosisOne woman said that her surgeon lsquoburned bits ofendometriosisrsquo during laparoscopy but did not persistwith the diathermy considering it to be too severe a treat-ment However the gynaecologist did not refer thewoman to an expert so there was no further follow up ofthis woman and her persisting symptoms Some of thewomen from the focus groups said they had undergonequite radical surgery without any of it making a differencein the longer term to their physical symptoms and sub-sequent consultations with endometriosis specialists leftthem in some doubt that the radical surgery had been theright treatment decision In a number of instances thewomen felt that gynaecologists who did not specialise inendometriosis shared the GPrsquos attitude of dismissing theirsymptoms and trivialising their problems

Some women spoke of the blunt way in which theywere told that they had endometriosis They said thereappeared to be no empathy from some doctors and thewomen indicated that they felt that this was related to thedoctorsrsquo lack of detailed knowledge about the conditionhow severe symptoms can be and the ramifications for thefuture lives of these women and their partners Onewoman who consulted a gynaecologist in a regional areasaid that this gynaecologist a woman told her that herchoice would be lsquoto become a lactating female meno-pausal or turn into a manrsquomdashand this at the age of 19 Shewas given no information and no options and eventuallymoved to the city to try to find help to better manage herlife

Having mentioned these problems the womenrsquos com-ments indicate that there was nowhere near the level ofdiscontent with gynaecologists as there was with GPs

Focus group study of endometriosis 7

Nevertheless it was with great emotion that many of thewomen spoke of finding gynaecologists who had specialistexpertise in endometriosis The relief of being diagnosedand of having someone able to explain their symptomsthe nature of the disease and the treatment options wastremendous and lifted a serious burden from the minds ofthese women

Taking control

Women in the focus groups indicated that they took seri-ously the decision to have an operation and that they likedto be in control of what happened to them when possibleOne woman said that she had no intention of being lsquocut upagainrsquo She indicated that she feared adhesions developingthat would prevent pregnancy and at the time of the focusgroup was intensely focused on her fertility This womanindicated that she felt cheated and was resisting any sug-gestion of succumbing to the disease lsquonormalrsquo treatments(hysterectomy) or anything that might suggest the diseasecould win over her desire to have a child

A number of women who participated in the focusgroups managed despite the odds to take back controlof their lives These women indicated that this was along and difficult road and that they recognised not allwomen would be able to achieve this These women alsoindicated the personal struggle they had had to go throughto gain strength for battle and that they wanted womenwho followed them not to have to learn to be strongthrough such adversity The sub themes in this categorywere lsquoUndoing the damagersquo lsquoSetting goalsrsquo and lsquoBecomingassertiversquo

Undoing the damage

The damage that occurred through GPs not listening nottaking symptoms seriously trivialising these womenrsquosexperiences and telling young women that their symp-toms were lsquoin their headsrsquo was deep and serious Fromwomenrsquos accounts the emotional backlash seemed to takea great deal of time and effort to undomdashif indeed it wasever undone The women who had learnt to take controlreported that they had done so because they had no choicein the end They had to force doctors to listen force doc-tors to refer them to the gynaecologist of their ownchoice force employers to be just in their dealings withthem and force their partners and friends to listen and tobe compassionate They got angry Having decided thatthey would no longer put up with being treated badlythey sought information Armed with as much informa-

tion as possible they then made their demands andinsisted on being heard Where they were still not listenedto they switched GPs or specialists they demanded goodcare and kept up the search until they got what theyneeded A number of women said that after locating theright consultant they returned to their GP only forscripts They were clear about what they wanted askedfor it and leftmdashthey never discussed what was happeningin their care or treatment having decided that there wasno point in consulting a GP for this aspect of their healthcare

Setting goals

Each of the women in the focus groups indicated that sheset a particular goal or goals for herself For most themain goal was to be drug free but at the same time receivegood pain management Another woman set her goal asgetting off lsquothe medical roundaboutrsquo she indicated thatshe did this through natural therapies diet and spiritualhealing She said that endometriosis had destroyed herrelationships and changed her life and that she could seeongoing surgery would produce more of the same Whendoctors indicated that she needed radical surgery tolsquoremove everythingrsquo she decided that she had hadenough At the time of the focus group she stated thatmost of her symptoms had subsided and she was manag-ing life well in general

Becoming assertive

Analysis of the womenrsquos responses showed that one of thethings that started women on the road to assertiveness wasrecording their symptoms locating their patterns andrealising that their symptoms were cyclical and had a basisin physiology Their statements revealed how they firstbegan to believe what they were feeling and started to rea-lise that they did really know their own bodies and couldtrust the judgements that they were making about whatwas happening to them This led the women to startrejecting what they were being told by those who weredismissive of them They said that now they could nametheir experience and that previously they were being bul-lied and further explained that emotionally they grewstronger with this knowledge

The women expressed that realising they were ulti-mately in charge was liberating This is not to say that lifehad become easier but that they no longer put up withtreatment that was less than they required and demandedAn outcome of this in the focus groups was the recogni-

8 H Cox

et al

tion by women that they could be responsible for some ofthe lsquospreading of the wordrsquo ensuring increased publicawareness and encouraging young women to seek helprather than thinking that their pain was period pain andtherefore lsquonormalrsquo Some women spoke of how they couldplay a role in educating their GP by passing on usefulinformation they had located thus helping other womento get better care

DISCUSSION

The information gleaned from the five focus groups high-lights a number of issues for women with endometriosisThese can be grouped as

1

The difficulty in locating information aboutendometriosis and the need for information not only forwomen who have or might have endometriosis but forpartners employers and others

2

Lack of knowledge and negative attitudes of GPs andnon-specialist gynaecologists and the resultant traumaand depression experienced by the women

3

The difficulty of learning to take control of their livesand be assertive in relation to communicating with healthcare professionals

The information given by the women in this study pre-sents a stark picture of marginalisation loss struggle andgrief and it is a picture that is similar for women in othercountries Studies in the United Kingdom

3

New Zealand

5

and the USA

6

have found that women experienced(i) delays in diagnosis (ii) chronic pain (iii) multiplelaparoscopies and infertility and (iv) loss of career andrelationships

Other studies have reported similar experiencesregarding GP knowledge of and attitudes towardsendometriosis The somatisation experienced by womenin Ballwegrsquos study was perhaps more extreme than thatexperienced by women in the present study but the triv-ialisation and dismissal of their problems was the sameand sometimes occurred for similar reasons

4

In addition GPsrsquo empathy towards sufferers has beencalled into question in this study Montague and Woodfound that only a minority of doctors held negativewoman-blaming attitudes towards patients withendometriosis with most demonstrating a sympatheticunderstanding of the broad range of problems and theirimplications for women with the disease

4

It is worth reit-erating since this is not what women in this studyreported the possible skewed nature of the compositionof the focus groups Women who had experienced signif-

icant problems with doctors may well have been themajority of those prepared to attend the focus groups spe-cifically because they wanted to voice their frustrationand they may have been a minority in respect of therespondents to the survey

Much of what was uncovered in these focus groups canbe alleviated with knowledge understanding and compas-sion The information presented in this paper is importantfor nurses in that it will help them to gain an understand-ing of what many women with endometriosis go throughin their journey to diagnosis and treatment It is hopedthat such understanding will encourage nurses to becompassionate when dealing with these women in anycontext

Future directions

The information collated from the focus groups stronglysuggests that we have only scratched the surface of difficultand at present apparently unavoidable experiences for anumber of women The women in this study were ada-mant about the need for health professionals to be bettereducated about endometriosis and for the production anddissemination of information not only to women withendometriosis but also to teachers employers partnersand family members

The researchers have taken a number of positive stepsin response to the findings of this study Among these are

1

The production of a booklet about endometriosis tobe distributed via the Endometriosis Association (Vic)

2

Journal articles written to target GPs andgynaecologists

3

Information distributed through GP divisionnewsletters

4

Targeted conference presentations to provide feedbackof results to relevant professional groups and to consumergroups

Further research studies are planned particularly inthe areas of quality of life and developing partneremployer knowledge about endometriosis and empathytowards sufferers

ACKNOWLEDGEMENTS

The Commonwealth Department of Health and AgedCare Consumer Focus Strategy aimed to strengthen therole of consumers in health service planning deliverymonitoring and evaluation To document good practice inconsumer involvement and to demonstrate promote andrefine resources developed under the Strategy a series of

Focus group study of endometriosis 9

small grants were provided to local partnerships of con-sumers and health providers

This study was funded by the Department of Healthand Aged Care as part of the Consumer and Provider Part-nerships in Health (CAPPS) Project series which weredesigned to further develop the evidence base underpin-ning effective consumer participation

The authors also acknowledge Margo Sheahan theCare Evaluation Coordinator at Epworth Hospital andthe members of the CAPPs Study Steering Committee inparticular Ms Terri Punshon the Facilitator and the Exec-utive of Epworth Hospital who supported this study in itsentirety

REFERENCES

1 Endometriosis Association (Vic)

What Is Endometriosis

Melbourne Endometriosis Association (Vic) 2000[Accessed July 2001] Available at httpwwwendometriosisorgausavvyendositewhatisendo

2 Zreik

T

Olive

D

Pathophysiology The biologic principles

of disease

Obstetrics and Gynaecology Clinics of North America

1997

24

259ndash2683 Carlton

D

Awareness of endometriosis

Practice Nurse

1996

12

514ndash5154 Montague

M

Wood

R

Diagnosing endometriosis GPrsquosknowledge attitudes and views on diagnosis

Report to the

Department of Health and Family Services General Practice Eval-

uation Program 1997

GPEP project 1997 3585 Grace

V

Problems women patients experience in the med-ical encounter for chronic pelvic pain a New Zealandstudy

Health Care for Women International

1995

16

509ndash519

6 Ballweg

M

Blaming the victim

Obstetrics and Gynaecology

Clinics of North America

1997

24

441ndash4537 American Psychiatric Association

Diagnostic and Statistical

Manual of Mental Disorders

4th edn Washington AmericanPsychiatric Association 2000

8 Henderson

L

Wood

R

Explaining Endometriosis

Mel-bourne Endometriosis Association (Vic) 2000

9 Garner

C

Coping with endometriosis

Office Nurse

1996

9

14ndash2110 Epworth Hospital Annual Report (2000) Melbourne

Epworth Hospital 2001

Focus group study of endometriosis 5

talk about what it was like to live with endometriosisbroadly Indeed each focus group could have run formuch longer such was the need of the women to tell ofthe trauma distress and anger of not being taken seri-ously Two subthemes could be identified under the themeof living with endometriosis lsquoThe long strugglersquo andlsquoDepressionrsquo

The long struggle

Most of the women had been living with endometriosisfor many years In some cases there was a significant gap(ie 38 years average from survey data) between theonset of symptoms and seeking help Some of the womenexplained that their experience of pap smears had beenextremely painful and made them reluctant to seek med-ical advice that would no doubt require a pelvic examina-tion Others said that they found intercourse painful andwere embarrassed to discuss such personal issues withanyone Some said they guessed that they might haveendometriosis but when they read a bit about it theybecame scared and decided they did not want to knowYet others had been convinced by their mothers aunts

teachers or others that painful periods were normal andno one had made any association with other symptomsthey were experiencing to connect them to a biggerpicture

Many of the women had experienced symptoms asadolescents that is in the 10ndash16 years age range Theyhad been through the struggle of the doctor trail ofparents who were unsympathetic and who felt that thiswas lsquoa womanrsquos lotrsquo particularly if their mother andgrandmothers had experienced painful periods also Thesymptoms of endometriosis pervaded these womenrsquoslives affecting everything from their work to relationshipsto future plans for conception Women told of losing jobsbecause of having to take too much sick leave A numberof women reported marriage breakdown because it was sohard for partners to live with the constancy of the diseaseMost women indicated they struggled to lead normallives and not to let this disease take over their sense ofself

Depression

A serious problem for many sufferers of endometriosis isthe development of depression One young woman toldthe group that she had been diagnosed as suicidal depres-sive and others had thought of suicide at some time Manywomen indicated that the struggle is compounded byworkplace discrimination issues and by being judged ahypochondriac by family members lsquoalways ill with some-thingrsquo Marriage breakdown and loss of partners andfriends is serious The majority of sufferers indicated theyfelt alone in a hostile world since the health professionalswho could legitimise their symptoms were dismissive ofthem and it seems that it seems that the damage to self-esteem done by the disbelief of health-care professionals isquite significant A large number of the women reportedfeeling worthless and hating being compared to otherwomen who are able to manage monthly periods and geton with life

Those women whose endometriosis had rendered theminfertile indicated they resented the judgement thatwomen with no children are not real women that theyhave failed in lifersquos purpose One woman said she feltangry at the current Australian Federal Governmentrsquoslsquobaby bonusrsquo for women with new babies stating that hertax is rewarding women for doing the very thing that hasbeen taken from her She considered that Governmentresources should also be put to use in the area of researchand treatment of endometriosis

Table 1

Focus group demographics (

n

=

61)

Variable

n

Age

20ndash24 5

25ndash29 10

30ndash34 19

35ndash39 9

40ndash44 9

45ndash49 6

50ndash54 2

55ndash59 0

60ndash64 1

Location

Victoria

City 44

Regional 4

Rural 4

Interstate

Qld 1

NSW 6

SA 2

6 H Cox

et al

The doctor trail

Almost every woman spoke at length of the years spentlsquodoctor shoppingrsquo to locate a doctor who would be sym-pathetic to her plight who would listen and believe herThe subthemes that arose under this main theme were lsquoGPtraumarsquo and lsquoThe specialistnon-specialist gynaecologistrsquo

GP trauma

Four women spoke about dealings with sensitive GPs Thiswas unusual because in the main women spoke of diffi-culties encountered with GPs One woman told of the 12-year trail she had been on before she found a GP whowould take her complaints seriously and not dismiss hersymptoms as period pain and something she just had toput up with Another told of the more than 100 GPs shehad visited in the same search and always she said sheended up feeling lsquothe victim of their disbelief and trivial-isationrsquo Almost all women had experienced doctors whotold them they were lsquotoo young to have endometriosisrsquoOne woman related a history of severe pain even while inearly high school Her GP told her repeatedly that it waslsquoin my headrsquo and it was not until she was 21 years of agethat she was diagnosed with endometriosis Sometimeswomen recalled the questions that they had been askedand their impression was that GPs did not ask the rightquestions so that the reality of their situation was notuncovered Some women expressed surprise that thefemale GPs they had consulted were not any more helpfulthan the male GPs One female GP who knew that herpatient had been diagnosed and treated for endometriosissaid when told the symptoms were coming back that thiswas lsquohighly unlikelyrsquo Indeed the patientrsquos endometriosishad returned and further surgery was required

Women told of how doctors refused to give referralsbecause they simply did not believe them In one instancea young woman whose mother had endometriosis sug-gested to her GP that she too might have symptoms of thedisease She was told it was highly unlikely and her GPwas reluctant to refer her on to a specialist She was toldlsquoletrsquos see what happensrsquo and she put up with her symp-toms for many years before finally insisting on beingreferred to a specialist The specialist diagnosed her withstage 4 endometriosis and told her that this meantendometriosis had lsquoglued her insides together in a chaoticmessrsquo with the result that she was required to undergoquite radical surgery

Another young woman who had complained of symp-toms for 2 years was told to settle into her new marriage

get her life together and come back in 12 months Thislsquogetting married and having kidsrsquo attitude to solvinggynaecological problems appears widespread among GPsIf there are benefits of pregnancy for women withendometriosis these were not explained to participants ofthe focus groups who indicated they felt fobbed off Par-ticipants expressed that they sensed there is an attitudinalproblem that GPs generally have toward lsquowomenrsquosproblemsrsquo

The specialistnon-specialist gynaecologist

Whether or not they had undergone a long journey to bereferred to a specialist the majority of women from thefocus groups did not necessarily find their problems withdoctors to be over In many cases gynaecologists them-selves had no specialised knowledge of endometriosisOne woman said that her surgeon lsquoburned bits ofendometriosisrsquo during laparoscopy but did not persistwith the diathermy considering it to be too severe a treat-ment However the gynaecologist did not refer thewoman to an expert so there was no further follow up ofthis woman and her persisting symptoms Some of thewomen from the focus groups said they had undergonequite radical surgery without any of it making a differencein the longer term to their physical symptoms and sub-sequent consultations with endometriosis specialists leftthem in some doubt that the radical surgery had been theright treatment decision In a number of instances thewomen felt that gynaecologists who did not specialise inendometriosis shared the GPrsquos attitude of dismissing theirsymptoms and trivialising their problems

Some women spoke of the blunt way in which theywere told that they had endometriosis They said thereappeared to be no empathy from some doctors and thewomen indicated that they felt that this was related to thedoctorsrsquo lack of detailed knowledge about the conditionhow severe symptoms can be and the ramifications for thefuture lives of these women and their partners Onewoman who consulted a gynaecologist in a regional areasaid that this gynaecologist a woman told her that herchoice would be lsquoto become a lactating female meno-pausal or turn into a manrsquomdashand this at the age of 19 Shewas given no information and no options and eventuallymoved to the city to try to find help to better manage herlife

Having mentioned these problems the womenrsquos com-ments indicate that there was nowhere near the level ofdiscontent with gynaecologists as there was with GPs

Focus group study of endometriosis 7

Nevertheless it was with great emotion that many of thewomen spoke of finding gynaecologists who had specialistexpertise in endometriosis The relief of being diagnosedand of having someone able to explain their symptomsthe nature of the disease and the treatment options wastremendous and lifted a serious burden from the minds ofthese women

Taking control

Women in the focus groups indicated that they took seri-ously the decision to have an operation and that they likedto be in control of what happened to them when possibleOne woman said that she had no intention of being lsquocut upagainrsquo She indicated that she feared adhesions developingthat would prevent pregnancy and at the time of the focusgroup was intensely focused on her fertility This womanindicated that she felt cheated and was resisting any sug-gestion of succumbing to the disease lsquonormalrsquo treatments(hysterectomy) or anything that might suggest the diseasecould win over her desire to have a child

A number of women who participated in the focusgroups managed despite the odds to take back controlof their lives These women indicated that this was along and difficult road and that they recognised not allwomen would be able to achieve this These women alsoindicated the personal struggle they had had to go throughto gain strength for battle and that they wanted womenwho followed them not to have to learn to be strongthrough such adversity The sub themes in this categorywere lsquoUndoing the damagersquo lsquoSetting goalsrsquo and lsquoBecomingassertiversquo

Undoing the damage

The damage that occurred through GPs not listening nottaking symptoms seriously trivialising these womenrsquosexperiences and telling young women that their symp-toms were lsquoin their headsrsquo was deep and serious Fromwomenrsquos accounts the emotional backlash seemed to takea great deal of time and effort to undomdashif indeed it wasever undone The women who had learnt to take controlreported that they had done so because they had no choicein the end They had to force doctors to listen force doc-tors to refer them to the gynaecologist of their ownchoice force employers to be just in their dealings withthem and force their partners and friends to listen and tobe compassionate They got angry Having decided thatthey would no longer put up with being treated badlythey sought information Armed with as much informa-

tion as possible they then made their demands andinsisted on being heard Where they were still not listenedto they switched GPs or specialists they demanded goodcare and kept up the search until they got what theyneeded A number of women said that after locating theright consultant they returned to their GP only forscripts They were clear about what they wanted askedfor it and leftmdashthey never discussed what was happeningin their care or treatment having decided that there wasno point in consulting a GP for this aspect of their healthcare

Setting goals

Each of the women in the focus groups indicated that sheset a particular goal or goals for herself For most themain goal was to be drug free but at the same time receivegood pain management Another woman set her goal asgetting off lsquothe medical roundaboutrsquo she indicated thatshe did this through natural therapies diet and spiritualhealing She said that endometriosis had destroyed herrelationships and changed her life and that she could seeongoing surgery would produce more of the same Whendoctors indicated that she needed radical surgery tolsquoremove everythingrsquo she decided that she had hadenough At the time of the focus group she stated thatmost of her symptoms had subsided and she was manag-ing life well in general

Becoming assertive

Analysis of the womenrsquos responses showed that one of thethings that started women on the road to assertiveness wasrecording their symptoms locating their patterns andrealising that their symptoms were cyclical and had a basisin physiology Their statements revealed how they firstbegan to believe what they were feeling and started to rea-lise that they did really know their own bodies and couldtrust the judgements that they were making about whatwas happening to them This led the women to startrejecting what they were being told by those who weredismissive of them They said that now they could nametheir experience and that previously they were being bul-lied and further explained that emotionally they grewstronger with this knowledge

The women expressed that realising they were ulti-mately in charge was liberating This is not to say that lifehad become easier but that they no longer put up withtreatment that was less than they required and demandedAn outcome of this in the focus groups was the recogni-

8 H Cox

et al

tion by women that they could be responsible for some ofthe lsquospreading of the wordrsquo ensuring increased publicawareness and encouraging young women to seek helprather than thinking that their pain was period pain andtherefore lsquonormalrsquo Some women spoke of how they couldplay a role in educating their GP by passing on usefulinformation they had located thus helping other womento get better care

DISCUSSION

The information gleaned from the five focus groups high-lights a number of issues for women with endometriosisThese can be grouped as

1

The difficulty in locating information aboutendometriosis and the need for information not only forwomen who have or might have endometriosis but forpartners employers and others

2

Lack of knowledge and negative attitudes of GPs andnon-specialist gynaecologists and the resultant traumaand depression experienced by the women

3

The difficulty of learning to take control of their livesand be assertive in relation to communicating with healthcare professionals

The information given by the women in this study pre-sents a stark picture of marginalisation loss struggle andgrief and it is a picture that is similar for women in othercountries Studies in the United Kingdom

3

New Zealand

5

and the USA

6

have found that women experienced(i) delays in diagnosis (ii) chronic pain (iii) multiplelaparoscopies and infertility and (iv) loss of career andrelationships

Other studies have reported similar experiencesregarding GP knowledge of and attitudes towardsendometriosis The somatisation experienced by womenin Ballwegrsquos study was perhaps more extreme than thatexperienced by women in the present study but the triv-ialisation and dismissal of their problems was the sameand sometimes occurred for similar reasons

4

In addition GPsrsquo empathy towards sufferers has beencalled into question in this study Montague and Woodfound that only a minority of doctors held negativewoman-blaming attitudes towards patients withendometriosis with most demonstrating a sympatheticunderstanding of the broad range of problems and theirimplications for women with the disease

4

It is worth reit-erating since this is not what women in this studyreported the possible skewed nature of the compositionof the focus groups Women who had experienced signif-

icant problems with doctors may well have been themajority of those prepared to attend the focus groups spe-cifically because they wanted to voice their frustrationand they may have been a minority in respect of therespondents to the survey

Much of what was uncovered in these focus groups canbe alleviated with knowledge understanding and compas-sion The information presented in this paper is importantfor nurses in that it will help them to gain an understand-ing of what many women with endometriosis go throughin their journey to diagnosis and treatment It is hopedthat such understanding will encourage nurses to becompassionate when dealing with these women in anycontext

Future directions

The information collated from the focus groups stronglysuggests that we have only scratched the surface of difficultand at present apparently unavoidable experiences for anumber of women The women in this study were ada-mant about the need for health professionals to be bettereducated about endometriosis and for the production anddissemination of information not only to women withendometriosis but also to teachers employers partnersand family members

The researchers have taken a number of positive stepsin response to the findings of this study Among these are

1

The production of a booklet about endometriosis tobe distributed via the Endometriosis Association (Vic)

2

Journal articles written to target GPs andgynaecologists

3

Information distributed through GP divisionnewsletters

4

Targeted conference presentations to provide feedbackof results to relevant professional groups and to consumergroups

Further research studies are planned particularly inthe areas of quality of life and developing partneremployer knowledge about endometriosis and empathytowards sufferers

ACKNOWLEDGEMENTS

The Commonwealth Department of Health and AgedCare Consumer Focus Strategy aimed to strengthen therole of consumers in health service planning deliverymonitoring and evaluation To document good practice inconsumer involvement and to demonstrate promote andrefine resources developed under the Strategy a series of

Focus group study of endometriosis 9

small grants were provided to local partnerships of con-sumers and health providers

This study was funded by the Department of Healthand Aged Care as part of the Consumer and Provider Part-nerships in Health (CAPPS) Project series which weredesigned to further develop the evidence base underpin-ning effective consumer participation

The authors also acknowledge Margo Sheahan theCare Evaluation Coordinator at Epworth Hospital andthe members of the CAPPs Study Steering Committee inparticular Ms Terri Punshon the Facilitator and the Exec-utive of Epworth Hospital who supported this study in itsentirety

REFERENCES

1 Endometriosis Association (Vic)

What Is Endometriosis

Melbourne Endometriosis Association (Vic) 2000[Accessed July 2001] Available at httpwwwendometriosisorgausavvyendositewhatisendo

2 Zreik

T

Olive

D

Pathophysiology The biologic principles

of disease

Obstetrics and Gynaecology Clinics of North America

1997

24

259ndash2683 Carlton

D

Awareness of endometriosis

Practice Nurse

1996

12

514ndash5154 Montague

M

Wood

R

Diagnosing endometriosis GPrsquosknowledge attitudes and views on diagnosis

Report to the

Department of Health and Family Services General Practice Eval-

uation Program 1997

GPEP project 1997 3585 Grace

V

Problems women patients experience in the med-ical encounter for chronic pelvic pain a New Zealandstudy

Health Care for Women International

1995

16

509ndash519

6 Ballweg

M

Blaming the victim

Obstetrics and Gynaecology

Clinics of North America

1997

24

441ndash4537 American Psychiatric Association

Diagnostic and Statistical

Manual of Mental Disorders

4th edn Washington AmericanPsychiatric Association 2000

8 Henderson

L

Wood

R

Explaining Endometriosis

Mel-bourne Endometriosis Association (Vic) 2000

9 Garner

C

Coping with endometriosis

Office Nurse

1996

9

14ndash2110 Epworth Hospital Annual Report (2000) Melbourne

Epworth Hospital 2001

6 H Cox

et al

The doctor trail

Almost every woman spoke at length of the years spentlsquodoctor shoppingrsquo to locate a doctor who would be sym-pathetic to her plight who would listen and believe herThe subthemes that arose under this main theme were lsquoGPtraumarsquo and lsquoThe specialistnon-specialist gynaecologistrsquo

GP trauma

Four women spoke about dealings with sensitive GPs Thiswas unusual because in the main women spoke of diffi-culties encountered with GPs One woman told of the 12-year trail she had been on before she found a GP whowould take her complaints seriously and not dismiss hersymptoms as period pain and something she just had toput up with Another told of the more than 100 GPs shehad visited in the same search and always she said sheended up feeling lsquothe victim of their disbelief and trivial-isationrsquo Almost all women had experienced doctors whotold them they were lsquotoo young to have endometriosisrsquoOne woman related a history of severe pain even while inearly high school Her GP told her repeatedly that it waslsquoin my headrsquo and it was not until she was 21 years of agethat she was diagnosed with endometriosis Sometimeswomen recalled the questions that they had been askedand their impression was that GPs did not ask the rightquestions so that the reality of their situation was notuncovered Some women expressed surprise that thefemale GPs they had consulted were not any more helpfulthan the male GPs One female GP who knew that herpatient had been diagnosed and treated for endometriosissaid when told the symptoms were coming back that thiswas lsquohighly unlikelyrsquo Indeed the patientrsquos endometriosishad returned and further surgery was required

Women told of how doctors refused to give referralsbecause they simply did not believe them In one instancea young woman whose mother had endometriosis sug-gested to her GP that she too might have symptoms of thedisease She was told it was highly unlikely and her GPwas reluctant to refer her on to a specialist She was toldlsquoletrsquos see what happensrsquo and she put up with her symp-toms for many years before finally insisting on beingreferred to a specialist The specialist diagnosed her withstage 4 endometriosis and told her that this meantendometriosis had lsquoglued her insides together in a chaoticmessrsquo with the result that she was required to undergoquite radical surgery

Another young woman who had complained of symp-toms for 2 years was told to settle into her new marriage

get her life together and come back in 12 months Thislsquogetting married and having kidsrsquo attitude to solvinggynaecological problems appears widespread among GPsIf there are benefits of pregnancy for women withendometriosis these were not explained to participants ofthe focus groups who indicated they felt fobbed off Par-ticipants expressed that they sensed there is an attitudinalproblem that GPs generally have toward lsquowomenrsquosproblemsrsquo

The specialistnon-specialist gynaecologist

Whether or not they had undergone a long journey to bereferred to a specialist the majority of women from thefocus groups did not necessarily find their problems withdoctors to be over In many cases gynaecologists them-selves had no specialised knowledge of endometriosisOne woman said that her surgeon lsquoburned bits ofendometriosisrsquo during laparoscopy but did not persistwith the diathermy considering it to be too severe a treat-ment However the gynaecologist did not refer thewoman to an expert so there was no further follow up ofthis woman and her persisting symptoms Some of thewomen from the focus groups said they had undergonequite radical surgery without any of it making a differencein the longer term to their physical symptoms and sub-sequent consultations with endometriosis specialists leftthem in some doubt that the radical surgery had been theright treatment decision In a number of instances thewomen felt that gynaecologists who did not specialise inendometriosis shared the GPrsquos attitude of dismissing theirsymptoms and trivialising their problems

Some women spoke of the blunt way in which theywere told that they had endometriosis They said thereappeared to be no empathy from some doctors and thewomen indicated that they felt that this was related to thedoctorsrsquo lack of detailed knowledge about the conditionhow severe symptoms can be and the ramifications for thefuture lives of these women and their partners Onewoman who consulted a gynaecologist in a regional areasaid that this gynaecologist a woman told her that herchoice would be lsquoto become a lactating female meno-pausal or turn into a manrsquomdashand this at the age of 19 Shewas given no information and no options and eventuallymoved to the city to try to find help to better manage herlife

Having mentioned these problems the womenrsquos com-ments indicate that there was nowhere near the level ofdiscontent with gynaecologists as there was with GPs

Focus group study of endometriosis 7

Nevertheless it was with great emotion that many of thewomen spoke of finding gynaecologists who had specialistexpertise in endometriosis The relief of being diagnosedand of having someone able to explain their symptomsthe nature of the disease and the treatment options wastremendous and lifted a serious burden from the minds ofthese women

Taking control

Women in the focus groups indicated that they took seri-ously the decision to have an operation and that they likedto be in control of what happened to them when possibleOne woman said that she had no intention of being lsquocut upagainrsquo She indicated that she feared adhesions developingthat would prevent pregnancy and at the time of the focusgroup was intensely focused on her fertility This womanindicated that she felt cheated and was resisting any sug-gestion of succumbing to the disease lsquonormalrsquo treatments(hysterectomy) or anything that might suggest the diseasecould win over her desire to have a child

A number of women who participated in the focusgroups managed despite the odds to take back controlof their lives These women indicated that this was along and difficult road and that they recognised not allwomen would be able to achieve this These women alsoindicated the personal struggle they had had to go throughto gain strength for battle and that they wanted womenwho followed them not to have to learn to be strongthrough such adversity The sub themes in this categorywere lsquoUndoing the damagersquo lsquoSetting goalsrsquo and lsquoBecomingassertiversquo

Undoing the damage

The damage that occurred through GPs not listening nottaking symptoms seriously trivialising these womenrsquosexperiences and telling young women that their symp-toms were lsquoin their headsrsquo was deep and serious Fromwomenrsquos accounts the emotional backlash seemed to takea great deal of time and effort to undomdashif indeed it wasever undone The women who had learnt to take controlreported that they had done so because they had no choicein the end They had to force doctors to listen force doc-tors to refer them to the gynaecologist of their ownchoice force employers to be just in their dealings withthem and force their partners and friends to listen and tobe compassionate They got angry Having decided thatthey would no longer put up with being treated badlythey sought information Armed with as much informa-

tion as possible they then made their demands andinsisted on being heard Where they were still not listenedto they switched GPs or specialists they demanded goodcare and kept up the search until they got what theyneeded A number of women said that after locating theright consultant they returned to their GP only forscripts They were clear about what they wanted askedfor it and leftmdashthey never discussed what was happeningin their care or treatment having decided that there wasno point in consulting a GP for this aspect of their healthcare

Setting goals

Each of the women in the focus groups indicated that sheset a particular goal or goals for herself For most themain goal was to be drug free but at the same time receivegood pain management Another woman set her goal asgetting off lsquothe medical roundaboutrsquo she indicated thatshe did this through natural therapies diet and spiritualhealing She said that endometriosis had destroyed herrelationships and changed her life and that she could seeongoing surgery would produce more of the same Whendoctors indicated that she needed radical surgery tolsquoremove everythingrsquo she decided that she had hadenough At the time of the focus group she stated thatmost of her symptoms had subsided and she was manag-ing life well in general

Becoming assertive

Analysis of the womenrsquos responses showed that one of thethings that started women on the road to assertiveness wasrecording their symptoms locating their patterns andrealising that their symptoms were cyclical and had a basisin physiology Their statements revealed how they firstbegan to believe what they were feeling and started to rea-lise that they did really know their own bodies and couldtrust the judgements that they were making about whatwas happening to them This led the women to startrejecting what they were being told by those who weredismissive of them They said that now they could nametheir experience and that previously they were being bul-lied and further explained that emotionally they grewstronger with this knowledge

The women expressed that realising they were ulti-mately in charge was liberating This is not to say that lifehad become easier but that they no longer put up withtreatment that was less than they required and demandedAn outcome of this in the focus groups was the recogni-

8 H Cox

et al

tion by women that they could be responsible for some ofthe lsquospreading of the wordrsquo ensuring increased publicawareness and encouraging young women to seek helprather than thinking that their pain was period pain andtherefore lsquonormalrsquo Some women spoke of how they couldplay a role in educating their GP by passing on usefulinformation they had located thus helping other womento get better care

DISCUSSION

The information gleaned from the five focus groups high-lights a number of issues for women with endometriosisThese can be grouped as

1

The difficulty in locating information aboutendometriosis and the need for information not only forwomen who have or might have endometriosis but forpartners employers and others

2

Lack of knowledge and negative attitudes of GPs andnon-specialist gynaecologists and the resultant traumaand depression experienced by the women

3

The difficulty of learning to take control of their livesand be assertive in relation to communicating with healthcare professionals

The information given by the women in this study pre-sents a stark picture of marginalisation loss struggle andgrief and it is a picture that is similar for women in othercountries Studies in the United Kingdom

3

New Zealand

5

and the USA

6

have found that women experienced(i) delays in diagnosis (ii) chronic pain (iii) multiplelaparoscopies and infertility and (iv) loss of career andrelationships

Other studies have reported similar experiencesregarding GP knowledge of and attitudes towardsendometriosis The somatisation experienced by womenin Ballwegrsquos study was perhaps more extreme than thatexperienced by women in the present study but the triv-ialisation and dismissal of their problems was the sameand sometimes occurred for similar reasons

4

In addition GPsrsquo empathy towards sufferers has beencalled into question in this study Montague and Woodfound that only a minority of doctors held negativewoman-blaming attitudes towards patients withendometriosis with most demonstrating a sympatheticunderstanding of the broad range of problems and theirimplications for women with the disease

4

It is worth reit-erating since this is not what women in this studyreported the possible skewed nature of the compositionof the focus groups Women who had experienced signif-

icant problems with doctors may well have been themajority of those prepared to attend the focus groups spe-cifically because they wanted to voice their frustrationand they may have been a minority in respect of therespondents to the survey

Much of what was uncovered in these focus groups canbe alleviated with knowledge understanding and compas-sion The information presented in this paper is importantfor nurses in that it will help them to gain an understand-ing of what many women with endometriosis go throughin their journey to diagnosis and treatment It is hopedthat such understanding will encourage nurses to becompassionate when dealing with these women in anycontext

Future directions

The information collated from the focus groups stronglysuggests that we have only scratched the surface of difficultand at present apparently unavoidable experiences for anumber of women The women in this study were ada-mant about the need for health professionals to be bettereducated about endometriosis and for the production anddissemination of information not only to women withendometriosis but also to teachers employers partnersand family members

The researchers have taken a number of positive stepsin response to the findings of this study Among these are

1

The production of a booklet about endometriosis tobe distributed via the Endometriosis Association (Vic)

2

Journal articles written to target GPs andgynaecologists

3

Information distributed through GP divisionnewsletters

4

Targeted conference presentations to provide feedbackof results to relevant professional groups and to consumergroups

Further research studies are planned particularly inthe areas of quality of life and developing partneremployer knowledge about endometriosis and empathytowards sufferers

ACKNOWLEDGEMENTS

The Commonwealth Department of Health and AgedCare Consumer Focus Strategy aimed to strengthen therole of consumers in health service planning deliverymonitoring and evaluation To document good practice inconsumer involvement and to demonstrate promote andrefine resources developed under the Strategy a series of

Focus group study of endometriosis 9

small grants were provided to local partnerships of con-sumers and health providers

This study was funded by the Department of Healthand Aged Care as part of the Consumer and Provider Part-nerships in Health (CAPPS) Project series which weredesigned to further develop the evidence base underpin-ning effective consumer participation

The authors also acknowledge Margo Sheahan theCare Evaluation Coordinator at Epworth Hospital andthe members of the CAPPs Study Steering Committee inparticular Ms Terri Punshon the Facilitator and the Exec-utive of Epworth Hospital who supported this study in itsentirety

REFERENCES

1 Endometriosis Association (Vic)

What Is Endometriosis

Melbourne Endometriosis Association (Vic) 2000[Accessed July 2001] Available at httpwwwendometriosisorgausavvyendositewhatisendo

2 Zreik

T

Olive

D

Pathophysiology The biologic principles

of disease

Obstetrics and Gynaecology Clinics of North America

1997

24

259ndash2683 Carlton

D

Awareness of endometriosis

Practice Nurse

1996

12

514ndash5154 Montague

M

Wood

R

Diagnosing endometriosis GPrsquosknowledge attitudes and views on diagnosis

Report to the

Department of Health and Family Services General Practice Eval-

uation Program 1997

GPEP project 1997 3585 Grace

V

Problems women patients experience in the med-ical encounter for chronic pelvic pain a New Zealandstudy

Health Care for Women International

1995

16

509ndash519

6 Ballweg

M

Blaming the victim

Obstetrics and Gynaecology

Clinics of North America

1997

24

441ndash4537 American Psychiatric Association

Diagnostic and Statistical

Manual of Mental Disorders

4th edn Washington AmericanPsychiatric Association 2000

8 Henderson

L

Wood

R

Explaining Endometriosis

Mel-bourne Endometriosis Association (Vic) 2000

9 Garner

C

Coping with endometriosis

Office Nurse

1996

9

14ndash2110 Epworth Hospital Annual Report (2000) Melbourne

Epworth Hospital 2001

Focus group study of endometriosis 7

Nevertheless it was with great emotion that many of thewomen spoke of finding gynaecologists who had specialistexpertise in endometriosis The relief of being diagnosedand of having someone able to explain their symptomsthe nature of the disease and the treatment options wastremendous and lifted a serious burden from the minds ofthese women

Taking control

Women in the focus groups indicated that they took seri-ously the decision to have an operation and that they likedto be in control of what happened to them when possibleOne woman said that she had no intention of being lsquocut upagainrsquo She indicated that she feared adhesions developingthat would prevent pregnancy and at the time of the focusgroup was intensely focused on her fertility This womanindicated that she felt cheated and was resisting any sug-gestion of succumbing to the disease lsquonormalrsquo treatments(hysterectomy) or anything that might suggest the diseasecould win over her desire to have a child

A number of women who participated in the focusgroups managed despite the odds to take back controlof their lives These women indicated that this was along and difficult road and that they recognised not allwomen would be able to achieve this These women alsoindicated the personal struggle they had had to go throughto gain strength for battle and that they wanted womenwho followed them not to have to learn to be strongthrough such adversity The sub themes in this categorywere lsquoUndoing the damagersquo lsquoSetting goalsrsquo and lsquoBecomingassertiversquo

Undoing the damage

The damage that occurred through GPs not listening nottaking symptoms seriously trivialising these womenrsquosexperiences and telling young women that their symp-toms were lsquoin their headsrsquo was deep and serious Fromwomenrsquos accounts the emotional backlash seemed to takea great deal of time and effort to undomdashif indeed it wasever undone The women who had learnt to take controlreported that they had done so because they had no choicein the end They had to force doctors to listen force doc-tors to refer them to the gynaecologist of their ownchoice force employers to be just in their dealings withthem and force their partners and friends to listen and tobe compassionate They got angry Having decided thatthey would no longer put up with being treated badlythey sought information Armed with as much informa-

tion as possible they then made their demands andinsisted on being heard Where they were still not listenedto they switched GPs or specialists they demanded goodcare and kept up the search until they got what theyneeded A number of women said that after locating theright consultant they returned to their GP only forscripts They were clear about what they wanted askedfor it and leftmdashthey never discussed what was happeningin their care or treatment having decided that there wasno point in consulting a GP for this aspect of their healthcare

Setting goals

Each of the women in the focus groups indicated that sheset a particular goal or goals for herself For most themain goal was to be drug free but at the same time receivegood pain management Another woman set her goal asgetting off lsquothe medical roundaboutrsquo she indicated thatshe did this through natural therapies diet and spiritualhealing She said that endometriosis had destroyed herrelationships and changed her life and that she could seeongoing surgery would produce more of the same Whendoctors indicated that she needed radical surgery tolsquoremove everythingrsquo she decided that she had hadenough At the time of the focus group she stated thatmost of her symptoms had subsided and she was manag-ing life well in general

Becoming assertive

Analysis of the womenrsquos responses showed that one of thethings that started women on the road to assertiveness wasrecording their symptoms locating their patterns andrealising that their symptoms were cyclical and had a basisin physiology Their statements revealed how they firstbegan to believe what they were feeling and started to rea-lise that they did really know their own bodies and couldtrust the judgements that they were making about whatwas happening to them This led the women to startrejecting what they were being told by those who weredismissive of them They said that now they could nametheir experience and that previously they were being bul-lied and further explained that emotionally they grewstronger with this knowledge

The women expressed that realising they were ulti-mately in charge was liberating This is not to say that lifehad become easier but that they no longer put up withtreatment that was less than they required and demandedAn outcome of this in the focus groups was the recogni-

8 H Cox

et al

tion by women that they could be responsible for some ofthe lsquospreading of the wordrsquo ensuring increased publicawareness and encouraging young women to seek helprather than thinking that their pain was period pain andtherefore lsquonormalrsquo Some women spoke of how they couldplay a role in educating their GP by passing on usefulinformation they had located thus helping other womento get better care

DISCUSSION

The information gleaned from the five focus groups high-lights a number of issues for women with endometriosisThese can be grouped as

1

The difficulty in locating information aboutendometriosis and the need for information not only forwomen who have or might have endometriosis but forpartners employers and others

2

Lack of knowledge and negative attitudes of GPs andnon-specialist gynaecologists and the resultant traumaand depression experienced by the women

3

The difficulty of learning to take control of their livesand be assertive in relation to communicating with healthcare professionals

The information given by the women in this study pre-sents a stark picture of marginalisation loss struggle andgrief and it is a picture that is similar for women in othercountries Studies in the United Kingdom

3

New Zealand

5

and the USA

6

have found that women experienced(i) delays in diagnosis (ii) chronic pain (iii) multiplelaparoscopies and infertility and (iv) loss of career andrelationships

Other studies have reported similar experiencesregarding GP knowledge of and attitudes towardsendometriosis The somatisation experienced by womenin Ballwegrsquos study was perhaps more extreme than thatexperienced by women in the present study but the triv-ialisation and dismissal of their problems was the sameand sometimes occurred for similar reasons

4

In addition GPsrsquo empathy towards sufferers has beencalled into question in this study Montague and Woodfound that only a minority of doctors held negativewoman-blaming attitudes towards patients withendometriosis with most demonstrating a sympatheticunderstanding of the broad range of problems and theirimplications for women with the disease

4

It is worth reit-erating since this is not what women in this studyreported the possible skewed nature of the compositionof the focus groups Women who had experienced signif-

icant problems with doctors may well have been themajority of those prepared to attend the focus groups spe-cifically because they wanted to voice their frustrationand they may have been a minority in respect of therespondents to the survey

Much of what was uncovered in these focus groups canbe alleviated with knowledge understanding and compas-sion The information presented in this paper is importantfor nurses in that it will help them to gain an understand-ing of what many women with endometriosis go throughin their journey to diagnosis and treatment It is hopedthat such understanding will encourage nurses to becompassionate when dealing with these women in anycontext

Future directions

The information collated from the focus groups stronglysuggests that we have only scratched the surface of difficultand at present apparently unavoidable experiences for anumber of women The women in this study were ada-mant about the need for health professionals to be bettereducated about endometriosis and for the production anddissemination of information not only to women withendometriosis but also to teachers employers partnersand family members

The researchers have taken a number of positive stepsin response to the findings of this study Among these are

1

The production of a booklet about endometriosis tobe distributed via the Endometriosis Association (Vic)

2

Journal articles written to target GPs andgynaecologists

3

Information distributed through GP divisionnewsletters

4

Targeted conference presentations to provide feedbackof results to relevant professional groups and to consumergroups

Further research studies are planned particularly inthe areas of quality of life and developing partneremployer knowledge about endometriosis and empathytowards sufferers

ACKNOWLEDGEMENTS

The Commonwealth Department of Health and AgedCare Consumer Focus Strategy aimed to strengthen therole of consumers in health service planning deliverymonitoring and evaluation To document good practice inconsumer involvement and to demonstrate promote andrefine resources developed under the Strategy a series of

Focus group study of endometriosis 9

small grants were provided to local partnerships of con-sumers and health providers

This study was funded by the Department of Healthand Aged Care as part of the Consumer and Provider Part-nerships in Health (CAPPS) Project series which weredesigned to further develop the evidence base underpin-ning effective consumer participation

The authors also acknowledge Margo Sheahan theCare Evaluation Coordinator at Epworth Hospital andthe members of the CAPPs Study Steering Committee inparticular Ms Terri Punshon the Facilitator and the Exec-utive of Epworth Hospital who supported this study in itsentirety

REFERENCES

1 Endometriosis Association (Vic)

What Is Endometriosis

Melbourne Endometriosis Association (Vic) 2000[Accessed July 2001] Available at httpwwwendometriosisorgausavvyendositewhatisendo

2 Zreik

T

Olive

D

Pathophysiology The biologic principles

of disease

Obstetrics and Gynaecology Clinics of North America

1997

24

259ndash2683 Carlton

D

Awareness of endometriosis

Practice Nurse

1996

12

514ndash5154 Montague

M

Wood

R

Diagnosing endometriosis GPrsquosknowledge attitudes and views on diagnosis

Report to the

Department of Health and Family Services General Practice Eval-

uation Program 1997

GPEP project 1997 3585 Grace

V

Problems women patients experience in the med-ical encounter for chronic pelvic pain a New Zealandstudy

Health Care for Women International

1995

16

509ndash519

6 Ballweg

M

Blaming the victim

Obstetrics and Gynaecology

Clinics of North America

1997

24

441ndash4537 American Psychiatric Association

Diagnostic and Statistical

Manual of Mental Disorders

4th edn Washington AmericanPsychiatric Association 2000

8 Henderson

L

Wood

R

Explaining Endometriosis

Mel-bourne Endometriosis Association (Vic) 2000

9 Garner

C

Coping with endometriosis

Office Nurse

1996

9

14ndash2110 Epworth Hospital Annual Report (2000) Melbourne

Epworth Hospital 2001

8 H Cox

et al

tion by women that they could be responsible for some ofthe lsquospreading of the wordrsquo ensuring increased publicawareness and encouraging young women to seek helprather than thinking that their pain was period pain andtherefore lsquonormalrsquo Some women spoke of how they couldplay a role in educating their GP by passing on usefulinformation they had located thus helping other womento get better care

DISCUSSION

The information gleaned from the five focus groups high-lights a number of issues for women with endometriosisThese can be grouped as

1

The difficulty in locating information aboutendometriosis and the need for information not only forwomen who have or might have endometriosis but forpartners employers and others

2

Lack of knowledge and negative attitudes of GPs andnon-specialist gynaecologists and the resultant traumaand depression experienced by the women

3

The difficulty of learning to take control of their livesand be assertive in relation to communicating with healthcare professionals

The information given by the women in this study pre-sents a stark picture of marginalisation loss struggle andgrief and it is a picture that is similar for women in othercountries Studies in the United Kingdom

3

New Zealand

5

and the USA

6

have found that women experienced(i) delays in diagnosis (ii) chronic pain (iii) multiplelaparoscopies and infertility and (iv) loss of career andrelationships

Other studies have reported similar experiencesregarding GP knowledge of and attitudes towardsendometriosis The somatisation experienced by womenin Ballwegrsquos study was perhaps more extreme than thatexperienced by women in the present study but the triv-ialisation and dismissal of their problems was the sameand sometimes occurred for similar reasons

4

In addition GPsrsquo empathy towards sufferers has beencalled into question in this study Montague and Woodfound that only a minority of doctors held negativewoman-blaming attitudes towards patients withendometriosis with most demonstrating a sympatheticunderstanding of the broad range of problems and theirimplications for women with the disease

4

It is worth reit-erating since this is not what women in this studyreported the possible skewed nature of the compositionof the focus groups Women who had experienced signif-

icant problems with doctors may well have been themajority of those prepared to attend the focus groups spe-cifically because they wanted to voice their frustrationand they may have been a minority in respect of therespondents to the survey

Much of what was uncovered in these focus groups canbe alleviated with knowledge understanding and compas-sion The information presented in this paper is importantfor nurses in that it will help them to gain an understand-ing of what many women with endometriosis go throughin their journey to diagnosis and treatment It is hopedthat such understanding will encourage nurses to becompassionate when dealing with these women in anycontext

Future directions

The information collated from the focus groups stronglysuggests that we have only scratched the surface of difficultand at present apparently unavoidable experiences for anumber of women The women in this study were ada-mant about the need for health professionals to be bettereducated about endometriosis and for the production anddissemination of information not only to women withendometriosis but also to teachers employers partnersand family members

The researchers have taken a number of positive stepsin response to the findings of this study Among these are

1

The production of a booklet about endometriosis tobe distributed via the Endometriosis Association (Vic)

2

Journal articles written to target GPs andgynaecologists

3

Information distributed through GP divisionnewsletters

4

Targeted conference presentations to provide feedbackof results to relevant professional groups and to consumergroups

Further research studies are planned particularly inthe areas of quality of life and developing partneremployer knowledge about endometriosis and empathytowards sufferers

ACKNOWLEDGEMENTS

The Commonwealth Department of Health and AgedCare Consumer Focus Strategy aimed to strengthen therole of consumers in health service planning deliverymonitoring and evaluation To document good practice inconsumer involvement and to demonstrate promote andrefine resources developed under the Strategy a series of

Focus group study of endometriosis 9

small grants were provided to local partnerships of con-sumers and health providers

This study was funded by the Department of Healthand Aged Care as part of the Consumer and Provider Part-nerships in Health (CAPPS) Project series which weredesigned to further develop the evidence base underpin-ning effective consumer participation

The authors also acknowledge Margo Sheahan theCare Evaluation Coordinator at Epworth Hospital andthe members of the CAPPs Study Steering Committee inparticular Ms Terri Punshon the Facilitator and the Exec-utive of Epworth Hospital who supported this study in itsentirety

REFERENCES

1 Endometriosis Association (Vic)

What Is Endometriosis

Melbourne Endometriosis Association (Vic) 2000[Accessed July 2001] Available at httpwwwendometriosisorgausavvyendositewhatisendo

2 Zreik

T

Olive

D

Pathophysiology The biologic principles

of disease

Obstetrics and Gynaecology Clinics of North America

1997

24

259ndash2683 Carlton

D

Awareness of endometriosis

Practice Nurse

1996

12

514ndash5154 Montague

M

Wood

R

Diagnosing endometriosis GPrsquosknowledge attitudes and views on diagnosis

Report to the

Department of Health and Family Services General Practice Eval-

uation Program 1997

GPEP project 1997 3585 Grace

V

Problems women patients experience in the med-ical encounter for chronic pelvic pain a New Zealandstudy

Health Care for Women International

1995

16

509ndash519

6 Ballweg

M

Blaming the victim

Obstetrics and Gynaecology

Clinics of North America

1997

24

441ndash4537 American Psychiatric Association

Diagnostic and Statistical

Manual of Mental Disorders

4th edn Washington AmericanPsychiatric Association 2000

8 Henderson

L

Wood

R

Explaining Endometriosis

Mel-bourne Endometriosis Association (Vic) 2000

9 Garner

C

Coping with endometriosis

Office Nurse

1996

9

14ndash2110 Epworth Hospital Annual Report (2000) Melbourne

Epworth Hospital 2001

Focus group study of endometriosis 9

small grants were provided to local partnerships of con-sumers and health providers

This study was funded by the Department of Healthand Aged Care as part of the Consumer and Provider Part-nerships in Health (CAPPS) Project series which weredesigned to further develop the evidence base underpin-ning effective consumer participation

The authors also acknowledge Margo Sheahan theCare Evaluation Coordinator at Epworth Hospital andthe members of the CAPPs Study Steering Committee inparticular Ms Terri Punshon the Facilitator and the Exec-utive of Epworth Hospital who supported this study in itsentirety

REFERENCES

1 Endometriosis Association (Vic)

What Is Endometriosis

Melbourne Endometriosis Association (Vic) 2000[Accessed July 2001] Available at httpwwwendometriosisorgausavvyendositewhatisendo

2 Zreik

T

Olive

D

Pathophysiology The biologic principles

of disease

Obstetrics and Gynaecology Clinics of North America

1997

24

259ndash2683 Carlton

D

Awareness of endometriosis

Practice Nurse

1996

12

514ndash5154 Montague

M

Wood

R

Diagnosing endometriosis GPrsquosknowledge attitudes and views on diagnosis

Report to the

Department of Health and Family Services General Practice Eval-

uation Program 1997

GPEP project 1997 3585 Grace

V

Problems women patients experience in the med-ical encounter for chronic pelvic pain a New Zealandstudy

Health Care for Women International

1995

16

509ndash519

6 Ballweg

M

Blaming the victim

Obstetrics and Gynaecology

Clinics of North America

1997

24

441ndash4537 American Psychiatric Association

Diagnostic and Statistical

Manual of Mental Disorders

4th edn Washington AmericanPsychiatric Association 2000

8 Henderson

L

Wood

R

Explaining Endometriosis

Mel-bourne Endometriosis Association (Vic) 2000

9 Garner

C

Coping with endometriosis

Office Nurse

1996

9

14ndash2110 Epworth Hospital Annual Report (2000) Melbourne

Epworth Hospital 2001