{"paper_id":"b2b95b72-20d7-4cb1-b5ad-343ab0adb08a","body_text":"Karavadra et al. BMC Women’s Health          (2025) 25:319  \nhttps://doi.org/10.1186/s12905-025-03869-y\nRESEARCH Open Access\n© The Author(s) 2025. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which \npermits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the \noriginal author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or \nother third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line \nto the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory \nregulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this \nlicence, visit http://creativecommons.org/licenses/by/4.0/.\nBMC Women’s Health\n‘I don’t know what normal has been’: \na grounded theory exploration of the journey \nto endometriosis diagnosis\nBabu Karavadra1*, Joanna Semlyen1, Edward Morris2 and Gabrielle Thorpe3 \nAbstract \nBackground Diagnosis of endometriosis in the United Kingdom takes on average eight years, with delay to diagno-\nsis contributing to physical, psychological and social burden for women experiencing endometriosis. This study aimed \nto explore experiences of diagnosis in women with confirmed endometriosis.\nMethods The study was informed by Constructivist Grounded Theory. Purposeful sampling was used to recruit fif-\nteen women with confirmed endometriosis to participate in semi-structured interviews. Delay to diagnosis was iden-\ntified as a key finding after analysis of four interviews and was therefore a focus for subsequent theoretical sampling. \nConstant comparative analysis generated codes and categories and ultimately a draft theory.\nResults A novel theoretical framework was developed, illustrating how participants fluctuated through four con-\ntexts of refusal, strong disbelief, weak disbelief and belief in their diagnosis journey, underpinned by a core category \nof ‘making sense of a fluctuating life’ . Within each context, the framework explicates how relational power and self-\nperception engenders a strong psychosocial influence on recognition of risk of harm from symptoms of endometrio-\nsis and consequent investigating behaviour.\nConclusions The journey to diagnosis of endometriosis involves a complex interplay of psychological, social \nand relational factors in driving or inhibiting help-seeking behaviour, requiring sensitivity, understanding and a com-\nmitment to listen and value women’s experiences within the clinical consultation to ensure timely and appropriate \ninvestigation and management.\nKeywords Endometriosis, Delay, Diagnosis, Grounded theory, Qualitative\nBackground\nEndometriosis is a common condition in women wherein \nendometrial stromal cells are found outside the endome -\ntrium (Giudice & Kao, 2004). The most common loca -\ntions for endometriosis to develop include the ovaries, \nfallopian tubes and pelvis (Nisolle & Donnez, 2019). \nEndometriosis can also develop within the gastrointesti -\nnal tract and the urological system, resulting in dysche -\nzia (difficulty in passing stool), blood in the stool and/\nor urine, and difficulties with urinating (Nisolle & Don -\nnez, 2019). Although traditionally viewed as a pelvic dis -\nease, endometriosis is now increasingly recognised as a \nchronic systemic disease that extends beyond the pelvis, \n*Correspondence:\nBabu Karavadra\nB.Karavadra@nhs.net\n1 University of East Anglia, Norwich Medical School Norwich Research \nPark, Norwich, Norwich NR4 7TJ, UK\n2 Obstetrics & Gynaecology, Norfolk & Norwich University Hospital, Colney \nLane, Norwich NR4 7UY, UK\n3 University of East Anglia, School of Health Sciences, Norwich Research \nPark, Norwich NR4 7TJ, UK\n\nPage 2 of 15Karavadra et al. BMC Women’s Health          (2025) 25:319 \nincluding the alteration of gene expression and provok -\ning systemic inflammation (Taylor et al., 2021). As endo -\nmetriosis can occur in young women aged 17 years and \nyounger (National Institute for Health & Care Excellence \n(NICE), 2024), the terms ‘women’ and ‘woman’ used \nthroughout this paper are inclusive of adolescent girls as \nwell as women of 18 years and older when applied in gen-\neral terms to all women who menstruate.\nThe ways in which endometriosis impacts on quality \nof life is well described in the literature (Lightbourne, \n2024; [25]). In a qualitative interview-based study of \n16 women with endometriosis, Roomaney and Kagee \n(2016) found that symptoms associated with endome -\ntriosis had a negative impact on work productivity, with \nconsequent financial implications, as well as on physi -\ncal, psychological and sexual function,many women felt \nimpaired in performing daily activities that were taken \nfor granted, described feelings of isolation and hopeless -\nness, and experienced painful sexual intercourse, result -\ning in relationship tensions (Roomaney & Kagee, 2016). \nRelationship tensions can be compounded by subfertility \nassociated with endometriosis (Moss et al., 2021). These \nfindings resonate with a longitudinal case-controlled \nstudy of 567 women under 25 years of age, in which Gal -\nlagher et al. (2018) found that young women with endo -\nmetriosis had worse physical and mental component \nscores when compared with controls, clearly highlighting \nthe negative impact of the condition on quality of life. In \naddition, the longer the time to diagnosis, the more sig -\nnificant the impact of endometriosis was found to be on \nquality of life (Gallagher et al., 2018).\nDelay to diagnosis of endometriosis is common. In the \nUK, it can take up to ten years to diagnose the condition \n(NICE, 2024; [7],Agarwal et al., 2019 and All Party Parlia-\nmentary Group (APPG) on Endometriosis, 2020). Indeed, \nendometriosis has been termed ‘the missed disease’ and \nhas an influence on the women’s health gap (The Lancet, \n2024). In a systematic review of 13 qualitative studies, \nDavenport et  al. [12] identified individual factors, inter -\npersonal influences, health system factors and factors \nspecific to endometriosis as key barriers to the diagno -\nsis of endometriosis. In 2017 (updated in 2024), NICE \npublished guidelines on the diagnosis and management \nof endometriosis, making reference to the timeframe \ninvolved in diagnosis as a research priority. The guideline \nhighlighted a need to improve the diagnosis of endome -\ntriosis and to explore the most effective ways to educate \nhealthcare professionals throughout the healthcare sys -\ntem to facilitate a reduction in time to diagnosis (NICE, \n2017,updated 2024).\nA timely diagnosis for any medical condition is impor -\ntant; in endometriosis, a diagnosis facilitates consid -\neration of appropriate medical and surgical treatment \noptions to improve health-related quality of life. A \ndiagnosis helps women to understand and legitimise \ntheir symptoms, supporting informed decision-making \n(Gaedtke, 2023). For those with subfertility, a diagnosis \nprior to commencing artificial reproductive treatment \nenhances the likelihood of conception (Moss et al., 2021).\nThe aim of this study was to explore the experiences of \nwomen with diagnosed endometriosis to understand fac -\ntors influencing diagnosis in women with endometriosis \nand how these impact on their journey to diagnosis.\nMethods\nStudy design\nThis study was informed by constructivist grounded \ntheory (CGT) [9] to identify an underlying theoreti -\ncal framework to elucidate the factors that influence the \nexperience and process of diagnosis of endometriosis \nand how they interact. CGT assumes that knowledge \nis constructed, rather than simply discovered [9] and is \nunderpinned by symbolic interactionism. Symbolic inter-\nactionism enables insights to be gained about how peo -\nple make sense of the world by identifying, exploring and \ninterpreting the meaning of the actions and interactions \n(constructs) that individuals have with society [8]. Con -\nsistent with CGT methodology, this study began with an \nexploration of experiences of diagnosis of endometrio -\nsis and allowed a theory of delay to diagnosis to develop \nfrom the inductive analysis of the data [9].\nThe research site for this study was a large NHS teach -\ning hospital trust the UK. Four women with endometrio -\nsis who were not participants in the study, two doctors \n(a consultant gynaecologist and a registrar in obstetrics \nand gynaecology who was training to become a con -\nsultant) and a sociologist comprised the study team and \nwere involved in the design of the study. The study was \napproved by the London-Surrey Borders Research Eth -\nics Committee via the Integrated Research Application \nSystem (IRAS) (approval no. 223380) and conducted \nin accordance with the ethical principles outlined in \nthe Declaration of Helsinki. All participants were fully \ninformed about the study through a participant informa -\ntion sheet and an opportunity to discuss any questions \nbefore providing written consent prior to enrolment in \nthe study.\nSampling and Recruitment\nPurposeful sampling was used to identify people meet -\ning the eligibility criteria. Those eligible for inclusion \nin the study were women aged 18  years or over with a \nconfirmed histological diagnosis of endometriosis, able \nto converse in English and with mental capacity to pro -\nvide informed consent. There were no exclusion criteria. \nThe study was advertised in the gynaecology outpatient \n\nPage 3 of 15\nKaravadra et al. BMC Women’s Health          (2025) 25:319 \n \ndepartment of a tertiary referral centre as well as via the \nlocal radio station, clearly defining the purpose of the \nresearch and the eligibility criteria. Snowball sampling, \nthrough which participants informed other women with \nendometriosis about the study, also facilitated identifica -\ntion of ‘hidden populations’ of women, who may not have \nhad direct access to the gynaecology clinic (Dragan & \nIsaic-Maniu, 2013).\nData collection\nFifteen women with confirmed endometriosis partici -\npated in the study (Table 1) between March 2018 to Sep -\ntember 2018. Semi-structured interviews were conducted \nby BK using an interview schedule (Supplementary File \n1) co-constructed with the study team. Interviews were \nall conducted in person, lasted between 30 and 120 min \nand took place in a private room in the Gynaecology \ndepartment at the research site. Each interview was audio \nrecorded and transcribed verbatim, with participants \nassigned a pseudonym at transcription.\nAs a male registrar in obstetrics and gynaecology at the \ntime, BK was interviewed by a qualitative researcher to \ndraw out any unconscious pre-conceptions that might \ninfluence his stance during data collection. During \ninterviews, active listening and open posture were used \nto establish rapport. The initial open question ‘please \ncan you take me through your journey of being diag -\nnosed with endometriosis?’ allowed participants, rather \nthan BK, to guide the conversation, with further open \nquestions and prompts used to explore meaning and to \ndeepen understanding.\nFollowing analysis of the first four interviews, it became \nclear that delay to diagnosis was a consistent focus in \nparticipants’ experiences. Women who specifically expe-\nrienced a delay to diagnosis of endometriosis were there -\nfore theoretically sampled to explore this aspect of the \nexperience of diagnosis in greater depth [11]. Concurrent \ndata collection and constant comparative data analysis [9, \n24] were informed by memo writing to capture emerg -\ning thoughts and ideas which influenced theoretical \nsampling and interpretations within the coding process. \nTheoretical saturation refers to the point at which no new \nproperties are generated for the chosen core categories \n[9] and was achieved after 15 interviews.\nData analysis\nConstant comparative analysis was applied in coding \nand category development, involving iteration back to \nraw data and across data sets to test impressions and \ninterpretations and then forwards to generating codes \nand categories and ultimately identifying a draft theory \n[9]. Figure  1 shows a schematic overview of the over -\nall process involved in generating a CGT, as depicted by \nCharmaz (2006, p.11).\nInitial coding is used in CGT to identify, compare, \nlabel and connect ‘incidents’ (Tie et al., 2019) – words or \nphrases that appear meaningful within the data. In keep -\ning with CGT methodology, code labels were grounded \nin the participants’ words [9]. Codes and emerging cat -\negories highlighted ‘clues’ that could be further explored \nin concurrent data collection [5] and were discussed \nwithin the research team to ensure that interpretations \nmade were grounded in the data rather than influenced \nby preconceived notions. Focused coding was used to \ninform a process of abstraction, through which catego -\nries were grouped around a potential core category, with \ntheoretical coding then used to synthesise categories \ninto a conceptually coherent and organised theory (Tie \net  al., 2019). A ‘storyline’ approach was used to present \nand explain the final Grounded Theory, creating a narra -\ntive of diagnosis of endometriosis that connected catego -\nries and elucidated the complexity underpinning delay \nto diagnosis (Birk & Mills, 2011). Summarising concepts \nused to frame the final Grounded Theory were generated \nthrough reflective interpretation with key quotes used to \n‘ground’ theoretical coding.\nResults\nThe underlying issue for women with endometriosis \nidentified in this CGT study involves ‘making sense \nof a fluctuating life’ (the core category). The study \nhighlighted physical and psychological symptoms \nTable 1 Participant demographics\nParticipant \npseudonym\nAge Race Time to diagnosis from \nonset of symptoms \n(years)\nJanet 22 White British 2\nDiana 23 White British 5\nGemma 45 White British 23\nAnna 22 White British 4\nHarissa 34 Asian Indian 1.5\nUmbola 43 Black African 17\nBarbara 28 White British 1\nFaye 27 White British 5\nNeha 23 Asian British 4\nMillie 40 White British 5\nAlma 22 White British 5\nBonnie 42 White British 4\nElisha 28 Asian Mixed 3\nErika 32 White British 3\nVivienne 33 White British 4\n\nPage 4 of 15Karavadra et al. BMC Women’s Health          (2025) 25:319 \nexperienced by women with endometriosis impact on \nevery aspect of their lives, influencing their experiences \nof work and education and particularly impacting on \ntheir close relationships with family and friends. Criti -\ncally, women’s experiences of the illness itself, and of \ntheir attempts to make sense of their symptoms, have a \nprofound and negative psychological impact, especially \nwith regards to their own identity. As their lives fluctu -\nate externally and internally, women seek to make sense \nof their experiences by exploring and investigating their \nsymptoms, which leads them, sooner or later, to seek a \ndiagnosis.\nContexts\nWomen’s pathways to diagnosis of endometriosis \nare likely to involve four ‘contexts’: refusal, disbelief \n(stronger and weaker) and belief (Fig.  2). The word \ncontext is used in this study to mean a psychological \nperspective which influences a woman’s beliefs about \ntheir symptoms and themselves and their help-seeking \nbehaviour. The contexts through which each woman \nexperiences her diagnosis are relational. This means \nthat each woman cycles between different contexts, \nsometimes fluctuating back and forth over time.\nIn the refusal context, the woman does not display \novert help seeking behaviour and therefore diagnosis \nis highly unlikely. In the strong disbelief context, the \nwoman will begin to recognise her symptoms as abnor -\nmal or problematic, but often indirectly through the \ndisruptive impact they have on her life in general; the \nwoman may therefore lack the insight or confidence to \nchallenge cultural norms and is likely to test her per -\nception of abnormality with trusted others rather than \nthrough seeking professional help. In the weak disbelief \ncontext, the woman will feel more secure in her belief \nof the abnormality of her symptoms and is likely to seek \nprofessional help, although formal diagnosis within this \ncontext remains unlikely due to her lack of self-confi -\ndence and the perceived low credibility of her evidence \nby healthcare professionals. In the belief context, the \nwoman’s investigating behaviours and the clinician’s \nresponse to them is most likely to lead to a diagnosis.\nGrounded in participants’ experiences, our findings \nhighlight how a woman’s context is influenced by (i) \nthe way in which other people respond to her and the \nbalance of power within these relationships (ii) how \neach woman perceives herself (iii) the extent of risk \nthat the woman recognises in relation to her symp -\ntoms and the impact these have on her life, and (iv) \nhow the previous three factors influence her investigat -\ning behaviour. These factors work together to influence \nthe way a woman interprets the meaning of her symp -\ntoms of endometriosis and therefore the way in which \nshe accesses information and support to address them \nthrough help-seeking behaviour, ultimately impacting \non the time taken to diagnose endometriosis (Fig. 3 ).\nThe four contexts form a framework through which \nthe findings of this study are represented, with par -\nticipants’ experiences of relational power, self-percep -\ntion, recognition of symptom risk and investigating \nbehaviour explored within each context and together \nused to explain how these can influence a woman’s \nFig. 1 adapted (re-created) overview of the process involved \nin developing a theory, as envisaged by Charmaz (2006, p.11)\n\nPage 5 of 15\nKaravadra et al. BMC Women’s Health          (2025) 25:319 \n \nexperiences and the duration of the process of diagno -\nsis of endometriosis.\nContext of refusal: “It’s normal”\nThe context of refusal is characterised by a woman not \nrecognising that she has a problem for which she needs to \nseek help. She is likely to be heavily influenced by those in \npositions of power in her life, who may not recognise that \nshe has a problem and tend to reassure her that her expe-\nriences are merely normal. This can diminish a woman’s \nautonomy as those around her may portray help seeking \nbehaviour as unnecessary, embarrassing or even atten -\ntion seeking and reinforce feelings of shame and a per -\nception of stigma regarding her symptoms, which they \nbelieve should remain hidden. This ‘normalisation’ or \ndismissal of symptoms means that a woman does not rec-\nognise that she has a problem for which she might need \nto seek support and help from others, particularly health-\ncare professionals, meaning that diagnosis of endome -\ntriosis is almost impossible, unless identified incidentally.\nPower: “I was told it’s women’s problems and it’s normal”\nWhen describing their experiences within the refusal \ncontext, participants revealed that power within rela -\ntionships tended to be focussed on others, most com -\nmonly the woman’s mother, partner or spouse. When \nparticipants sought to ‘check out’ their symptoms with \npeople they trusted, the symptoms tended to be nor -\nmalised or dismissed, sometimes making the woman \nfeel that she was exaggerating or making a fuss. As \nFig. 2 Diagrammatic representation of the women’s contexts in their experience of diagnosis of endometriosis\nFig. 3 The grounded theory: Different contexts and their influencing factors\n\nPage 6 of 15Karavadra et al. BMC Women’s Health          (2025) 25:319 \nmany participants first experienced their symptoms \nwhen they were an adolescent and had no prior normal \nmenstrual experiences to compare their symptoms to, \nthey placed their trust in the people who they thought \nwould know better and therefore did not question the \nresponses they received.\n‘My parents knew how much pain I was in, but they \nsaid it will become better in time and I just went \nwith that’ (Elisha).\nWhen symptoms related to participants’ menstrual \ncycle, their mothers often normalised her experiences, \nciting a family history of heavy periods or gynaecological \nissues.\n‘Mum always said my nan’s periods were bad. It \ngives the impression that maybe this is just how \nwomen in my family are built’ (Faye)\n‘I was told it’s women’s problems and it’s normal. \nGynae problems run in my family and so I always \nknew this was normal for me. My mum even told me \nthey were normal for us all’ (Millie).\nWhen Alma sought advice about her heavy and pain -\nful periods from her school nurse, she was reassured that \nthey were normal and that she need not worry.\n‘Even at school, my periods were so heavy and so \npainful. But the school nurse said they were fine. So \nthen, I thought it was normal too. ’ (Alma).\nSelf‑perception: “I am weak and pathetic because I can’t \ndeal with periods”\nIn the context of disbelief, some participants described \na need or a perceived or actual expectation from others \nto hide or ignore their endometriosis symptoms, by their \nnature intrinsically bound to their identity as a woman, \nwhich therefore created a tension in their self-percep -\ntion. Bonnie shared these feelings in relation to her rela -\ntionship with her boyfriend, while Alma referred to her \nencounter with the school nurse, both demonstrating \nthat others’ dismissal of their symptoms led to feelings of \nstigma and shame and on their recognition of the severity \nand meaning of their symptoms:\n‘I just couldn’t believe it when my boyfriend asked \nme to stop talking about my period and said it was \nweird to talk about it. It made me feel awkward and \nthat I shouldn’t talk about it’ (Bonnie).\n‘I learnt very quickly at age 11 that you can’t talk \nabout periods. The school nurse tells you not to talk \nabout them or doesn’t want to hear about it... eve -\nryone has periods and I felt that I was weak and \npathetic because I can’t deal with them’ (Alma).\nRecognising risk: “periods are supposed to be painful \nand heavy”\nAll participants discussed how in retrospect they could \nrecognise when they started experiencing abnormal bod -\nily experiences, but these were not recognised as prob -\nlems or ‘symptoms’ at the time:\n‘I don’t know what normal has been because from \nthe very first period I ever had was heavy and its \nalways been really heavy, it’s always been really, \nreally painful, but I suppose in my teens I just put \nthat down to what I expected of a period, it was sup -\nposed to be painful, it was supposed to be heavy, you \nknow, that’s what I thought was normal’ (Vivienne).\nInvestigating behaviour: “it didn’t even cross my mind \nto see a doctor”\nIn the context of refusal, participants did not recognise \nrisk and so any investigating behaviour was limited to \nseeking reassurance from trusted others.\n‘I never thought I would have a gynaecology problem \nlike this. When I first felt unwell, I kept talking to \nmy mum and got through it. It didn’t even cross my \nmind to see a doctor’ (Erika)\nNormalisation of their symptoms by participants them-\nselves also meant that they were not inclined to seek \nmedical help in this context.\n‘I genuinely thought heavy periods were normal \nbecause everyone else around you makes you feel \nthat. You don’t even think to see a doctor when you \nare told your symptoms are just normal’ (Faye)\nContext of strong disbelief: “I knew there was a problem … I \njust blanked it out of my mind”\nA woman leaves the refusal context and moves to the \ncontext of strong disbelief when she recognises that there \nis a problem. In a context of strong disbelief, a woman \nconsciously notices her bodily experiences as abnormal \nand starts to explore their meaning. This context is char -\nacterised by narratives such as ‘watching and waiting’ \n‘sense-making’ and ‘testing ideas and perceptions of the \nproblem with others. ’ However, in this context, a woman \nremains strongly influenced by others’ opinions and will \ntherefore be persuaded to doubt her own perception of \nrisk as her symptoms continue to be normalised. As a \nresult, she may internalise feelings of shame in relation \nto her abnormal symptoms and perceive herself as abnor-\nmal rather than recognising her symptoms as worthy of \ninvestigation, affecting her self-perception. Women still \ndo not seek healthcare professional support in this con -\ntext as they are unlikely to perceive their symptoms as \n\nPage 7 of 15\nKaravadra et al. BMC Women’s Health          (2025) 25:319 \n \na medical problem. For these reasons, a woman is very \nunlikely to be diagnosed with endometriosis in a context \nof strong disbelief.\nPower: “I trusted him more than I trusted myself”\nIn the context of strong disbelief, power can be focussed \non a significant other, such as a parent, partner or spouse. \nErika illustrates here how her partner’s response strongly \ninfluenced how she made sense of her symptoms:\n‘I wanted it all to go away. I knew there was a prob -\nlem. My partner told me that the pain will get bet -\nter and just to wait. I just blanked it out in my mind \nfor a bit despite feeling so awful and in pain all the \ntime. I guess I just trusted him more than I trusted \nmyself’ (Erika).\nUmbola describes a sense of resignation that even \nthough she recognised she had a problem, the responses \nof others made her feel uncomfortable talking about it \nand therefore disempowered her sense of agency to seek \nthe help she needed.\n‘What’s the point in even talking about how pain -\nful my periods were when everyone makes you feel \nawkward about and tells you it is part of being a \nwoman. In hindsight, I wish I had the confidence to \nspeak up’ (Umbola)\nSelf‑perception: “I went through a phase of believing it \nwas normal and then abnormal”\nWhen participants in this study recognised that they had \na problem, many described ‘watching and waiting’ or try-\ning to ignore their symptoms for fear that recognising \ntheir abnormality would mean changes in their life for \nwhich they were not ready. As illustrated above and in \nthis quotation from Alma, the power of the partner can \nimpact strongly on the woman’s self-perception, making \nher doubt herself and the significance of her symptoms.\n‘I was like, well why are all these test results coming \nback as normal. Before I went to the doctor, I went \nthrough a phase of believing it was normal and \nthen abnormal. Mum made me think it was abnor -\nmal. After the scan came back normal, I thought \nmy symptoms probably are just normal and there \nis nothing wrong. I then didn’t see the doctor for a \nwhile’ (Erika).\nRecognising risk: “everything I was going through was not \nnormal”\nIn this context, a woman is likely to be in the early stages \nof her illness and seeks to make sense of what is happen -\ning. As part of their sense-making, some participants \ndescribed trying to compare their bodily experiences \nto their first experiences of menarche and because the \nbleeding and pain were intense then, they tended to nor -\nmalise their subsequent symptoms.\n‘As I got older, I remember comparing how bad the \npain was to my first period- it was so painful from \nthe start and so this was just normal for me didn’t \nfeel the need to see the GP’ (Umbola)\nSome did not recognise risk in terms of symptoms but \ndescribed other aspects of their lives that were impacted \nnegatively (‘fluctuating’) by their symptoms, which high-\nlighted that there was a problem. One participant recog -\nnised her bodily experiences were abnormal when she \noverheard her parents argue about the amount of time \nshe was taking off school as a result of her period pains. \nTheir apparent acknowledgement of her symptoms ena -\nbled her to recognise herself that she had a problem.\n‘I remember one day my parents arguing about how \nmuch time I had off school. It was at this point that I \nstarted to think that everything I was going through \nwas not normal- not that this made me go to the \ndoctor straight away!’ (Elisha)\nAs well as the impact of their symptoms on their rela -\ntionships, indirect signs of a fluctuating life triggered by \ntheir symptoms of endometriosis were reflected in par -\nticipants’ accounts of how they curtailed their social \nactivities, being unable to continue swimming (Janet), \nrunning (Neha), playing hockey (Diana) or participating \nin physical education classes (Faye). This had an emo -\ntional and psychological impact on some women.\n‘I remember telling my partner that my periods were \ngetting so bad and heavy and it was making me \ndepressed’ (Elisha)\nInvestigating behaviour: “I waited for so many months”\nIn a context of strong disbelief, investigating behaviour \nappeared to continue to be influenced by participants \nadopting a ‘watch and wait’ approach and a general sense \nthat the credibility of their evidence is too weak to pre -\nsent it to a healthcare professional.\n‘Before I even went to see them [GP], I waited for so \nmany months as I thought things would get better’ \n(Alma).\nI eventually went and saw the GP, but this took \nmonths on end before I did’ (Neha).\nJanet demonstrates how interactions with power -\nful others can have a profound effect on investigating \nbehaviour in the context of strong disbelief. In the face of \nthe normalising behaviour of her mother, she oscillated \nbetween telling herself that her experiences were normal, \n\nPage 8 of 15Karavadra et al. BMC Women’s Health          (2025) 25:319 \ndespite recognising the severity of her pain. This accept -\nance of her mother’s normalisation led Janet to suspend \nher investigating behaviour.\n‘When I look back at my younger self, why did I \nthink my symptoms were normal for so long? I know \nfor sure that my mum was a big part in this as she \ntried to reassure me that the pain will go away. I just \naccepted it, for years literally’ (Janet)\nContext of weak disbelief: “I knew my symptoms were \nnot normal … I challenged her [GP]”\nIn the context of weak disbelief, the woman is more con -\nfident in her recognition of risk of harm from her symp -\ntoms and therefore more empowered to argue against \nsymptom normalisation or dismissal from others. The \nwoman is persistent and tenacious in pursuing health \ncare professional help through her investigating behav -\niour. How healthcare professionals respond to a woman’s \ninvestigating behaviour largely determines whether the \nwoman will oscillate back to a context of strong disbe -\nlief (if they dismiss symptoms as normal or not worthy of \ninvestigation) or move forward to belief (by recognising \nthat there is a problem and as such, start to undertake a \nrange of investigations). A diagnosis is more likely in this \ncontext.\nPower: “I changed to a different GP who didn’t normalise \nmy symptoms”\nIn this context, participants were sufficiently empowered \nto seek help for their symptoms, but some found that \nclinicians did not recognise the symptoms and experi -\nences that participants described as important or cred -\nible. Participants responded in one of two ways when \nthis happened, either accepting this assessment and \nmoving back to a context of strong disbelief or challeng -\ning this response. Alma and Umbola demonstrated in \ntheir narratives how the balance of power had changed \nat this stage from earlier in their journey to diagnosis – \nthey were confident in the abnormality of their symp -\ntoms, which empowered them to challenge their GP’s \ndecision-making:\n‘When I saw the GP and explained my symptoms, \nhe said this was normal and there was no need for \na gynaecology referral. I got angry and asked why he \nrefused to do so’ (Alma).\n‘I knew my symptoms were not normal and when \nthe GP said there wasn’t anything wrong with me, \nI challenged her. It was a weird feeling at first, but \nI did it. I eventually changed to a different GP who \ndidn’t normalise my symptoms’ (Umbola)\nIn this context, the healthcare professional may rec -\nognise that there are symptoms to be treated but may \nnot recognise the risk or significance of the problem, so \nfrustrating the woman’s attempts to have their symp -\ntoms investigated further and gain a diagnosis. Gemma \nexpressed her frustration at her GP’s response to her \nhelp-seeking behaviour:\n‘A lot of GPs treat the symptoms rather than the \nactual cause. I know it’s hard, but surely they can \ntreat the symptoms and investigate you for why \nit’s actually happening. Just starting the pill is not \nenough!’ (Gemma).\nFor Alma, although her recognition of her abnormal \nbodily experiences drove her to seek medical help, the \ndismissal of her symptoms as normal by two profes -\nsionals in positions of authority made her question the \ncredibility of her own evidence and instigated a move \nbackwards to a context of strong disbelief.\n‘I saw a gynaecologist there and my family doctor - \nthey both reassured me it’s normal. When you have \na professional like a doctor and someone close to you \nlike your family telling you its normal, then what \nam I supposed to believe? Of course, I accepted this!’ \n(Alma).\nSelf‑perception: “I just didn’t know what to believe”\nIn the context of weak disbelief, healthcare profession -\nals were reported to be more open to discussing and \ninvestigating the meaning of participants’ symptoms, but \nthe women still perceived resistance or doubt. When a \nhealthcare professional explored the possibilities of dif -\nferent diagnoses, including endometriosis, this validated \nparticipants’ self-perception. However, several partici -\npants reported that when medical investigations return \na result of ‘normal’ this made them question their self-\nperception, wondering if their symptoms were indeed \nnormal, and therefore questioning the credibility of their \nown evidence. This doubt initiated a move back to a con -\ntext of strong disbelief for some and a consequent decline \nin investigating behaviour.\n‘I then got investigated for all sorts, IBS, cysts etc by \nthe GP…I thought I was going mad’ (Janet).\n‘Your mind plays tricks. I just didn’t know what to \nbelieve. You are desperate to get an answer, but then \nthe doctor tells you nothing is wrong. This was hard \nto deal with’ (Alma).\nRecognising risk: “My ‘mattress moment’”\nHaving recognised in the context of strong belief that \nher life is fluctuating, in the context of weak disbelief, a \nwoman associates her fluctuating life directly with the \n\nPage 9 of 15\nKaravadra et al. BMC Women’s Health          (2025) 25:319 \n \nabnormality of her symptoms. Most participants had \ncycled through contexts of refusal and disbelief for a \nprotracted period of time, oscillating between believ -\ning symptoms to be normal or abnormal dependent on \ntheir own perception of risk and the views of those from \nwhom they sought help. For some there comes a moment \nof personal transition: described by Gemma as her ‘mat -\ntress moment’ .\n‘We were about to carry it [a blood-soiled mattress] \nout of the house and my poor husband is so caring. \nWe carried this mattress out of the house and the \nbuilders were there. The builders were our friends \nand I felt disgusted and embarrassed. I felt so dis -\ngusted. Have I done something wrong? Is this nor -\nmal? Am I not using the right stuff? Is it because I \nhaven’t taken the tranexamic acid? You blame your \nbody. It was only when I saw this mattress being \ncarried out of the house that I realised how real my \nsymptoms were. This was my “mattress moment” . \n(Gemma).\nGemma’s experience highlights a cease to oscillation \nbetween refusal and disbelief. Recognition of risk for \nthis participant was not just of her symptoms, but also of \nher own refusal, disbelief, and empowerment. This one \nmoment allowed her to view her situation with clarity for \nthe first time and provided her with the self-belief to pur-\nsue a diagnosis.\nInvestigating behaviour: “I would go to the doctor armed \nwith my own research”\nIn the context of weak disbelief, some participants found \nways to package their symptoms to demonstrate symp -\ntom credibility to healthcare professionals and enable \nthe healthcare professional to recognise them as worthy \nof investigation. This approach facilitated conversations \nwith powerful others, such as healthcare professionals, to \nensure that the risk was recognised by them and actions \ntaken. While Alma went to the doctor ‘armed with her \nown research, ’ Vivienne used a symptom diary in her \nconsultation with her GP:\n‘They must think, is it worth pushing this girl for -\nward for referral at such a young age? I understand \nthis and I’m sure they were doing it in my best inter-\nests, but it also meant I was left untreated. When \ndoctors came back to me “empty” then I would \nalways go to the doctor armed with my own research’ \n(Alma).\n‘Maybe she understood actually what I was experi -\nencing wasn’t normal as I took my symptom diary \nin. She was impressed with it’ (Vivienne).\nEven in a context of weak disbelief, taking part in a \nmedical consultation was clearly expressed by partici -\npants as a challenging experience. These women experi -\nenced being dismissed, feeling that they were not being \ntaken seriously and that their concerns and expectations \nwere not valued. The impact of the clinician’s power on \nthe woman’s investigating behaviour was profound in \nsome cases, illustrated here by Faye, who declined to seek \nfurther medical help for several years as she moved back \nto a context of strong disbelief:\n‘So, yeah, I went to the GP and I felt so happy to get \nthe appointment. He trampled all over my feelings \nand what I was telling him. No point even going as \nhe made me feel shit. I was already dubious about \ngoing. He didn’t even acknowledge how awful things \nwere. I didn’t go back for years’ (Faye).\nContext of belief: “I knew my symptoms were being taken \nseriously”\nIn the belief context, the woman is validated through her \nexperience with the healthcare professional and through \na referral to gynaecology. The woman is the most empow-\nered compared to the other contexts and believes in her -\nself that there is a problem and participates actively in the \nprocess of obtaining a diagnosis. As they enter a context \nof belief with their healthcare professionals, at best the \nwomen will feel empowered, having made sense of their \nsymptoms and experiencing confidence in the credibility \nof their evidence. This context focuses on being believed \nby others and the impact of their empowerment on \nwomen’s self-perception. A diagnosis is most likely in the \nbelief context, and if there is any delay, it is more likely \ndue to structural reasons (NHS waiting times).\nPower: “[I would] challenge others if they didn’t believe me \nor were dismissive”\nAll participants expressed greater power when seeking \nmedical help in the context of belief than previously in \ntheir journey to diagnosis. A key differentiating factor \nin the belief context was that healthcare professionals \nexplored the meaning of women’s symptoms with them, \nrecognising the symptoms to be abnormal. This relates \nto a central narrative of being believed and feeling pow -\nerful enough to re-disclose symptoms to the healthcare \nprofessional:\n‘When my doctor started to ask more questions about \nmy symptoms and took a real interest in me as a per-\nson, I just knew that my symptoms were being taken \nseriously and this made me challenge others if they \ndidn’t believe me or were dismissive. Even she said she \ncouldn’t understand why other doctors had told me \nmy symptoms were normal. What a moment this was \n\nPage 10 of 15Karavadra et al. BMC Women’s Health          (2025) 25:319 \nfor me! Yay, I was right all along! I really felt I could \ngo through my whole story again without worrying’ \n(Harissa).\nEven when the severity of her symptoms was not recog-\nnised by others, in the belief context Neha was empowered \nto challenge others’ dismissal of her symptoms, motivated \nby her perception of the unfairness and injustice of how her \nsymptoms impacted her as a woman:\n‘My symptoms were just getting worse and it stopped \nme from doing literally everything. How could this \nawful pain only happen to me as a woman? If any -\nthing, knowing this was a female issue, it made me \npush more for a diagnosis’ (Neha).\nSelf‑perception: “I cried as I finally started to believe \nin myself”\nRecognition of symptoms as worthy of further investiga -\ntion within the context of a clinical consultation provided \nparticipants with a sense of validation and acknowledge -\nment that symptoms were ‘real. ’\n‘My God, when the GP looked through my records and \nsaw how badly my symptoms affected me, she recog -\nnised how bad this situation was. I cried as I finally \nstarted to believe in myself and that I shouldn’t put \nmyself down because other people don’t understand. \nMy symptoms suddenly felt more real in a weird way’ \n(Faye)\nParticipants described validation as stemming from \nacknowledgement of the challenge of their personal jour-\nney or the duration of symptoms, discussion about the \nimpact that unexplained symptoms were having on their \nquality of life or their relationship with their partner or a \nclinician taking time to guide them through the diagnostic \nprocess to rule out different potential causes of symptoms. \nThe impact of being believed in relation to her symptoms, \nwas a pivotal moment for Umbola:\n‘I mean, even when the gynaecologist asked me how I \nwas, I just burst into tears. It felt like someone actually \nbelieved me because they were asking me how I was \nfeeling’ (Umbola).\nBeing listened to and believed facilitated acceptance of \nthe process of investigation ahead:\n‘When she explained the way referral works, I under-\nstood better that this won’t be an easy journey, but I \nwas prepared eventually for this’ (Harissa).\nRecognising risk: “my symptoms could lead to fertility \nproblems and cause scarring”\nParticipant’s perception of the risk of harm was greatest \nwithin the belief context. They began to diagnose them -\nselves with endometriosis through self-research and \nonline forums and pushed the healthcare professionals \nthey encountered to facilitate diagnosis through inter -\nventions or referral to secondary care. Finding peers who \nhad experienced similar symptoms and achieved diagno -\nsis was a powerful factor in recognising the risk and sig -\nnificance of their symptoms.\n‘I just had enough after years of not being believed. \nNo way was I going to leave the GP consulting room \nwithout a way forward. I had joined an online group \nand all the ladies on there told me that my symp -\ntoms could lead to fertility problems and cause scar-\nring’ (Neha)\nInvestigating behaviours: “we made a plan together \nand slowly worked through it”\nWhen participants were believed and felt listened to, \ntheir trust in the health professionals caring for them \nincreased. They were less inclined to challenge and push \nhealthcare professionals for investigations and diagnosis \nand described a willingness to work with the healthcare \nsystem.\n‘This particular GP was wonderful. The feeling \nbetween us was so different and I knew I didn’t need \nto be defensive or argumentative to get a referral to \nthe gynaecologist’ (Elisha)\nThe importance of trust between the patient and \nhealthcare professional was a key factor in participants \naccepting the waiting times for a referral to gynaecology \nand further delay to definitive diagnosis. Knowing that \nthere was an ongoing investigative pathway in progress, \nwaiting to see a specialist did not necessarily matter:\n‘I was told the wait to see a gynaecologist was long, \nbut I knew things were moving forward and that was \nok’ (Umbola)\nIn the belief context, Neha was able to freely discuss \nher symptoms, without perceiving adverse judgement \nfrom her GP , which facilitated collaborative decision-\nmaking about her care and a reframing of the balance of \npower in the therapeutic relationship.\n‘When the GP said we need to look into the symp -\ntoms further and told me all the ways, I was happy. \nShe wasn’t judgy and that was important to me. We \nmade a plan together and slowly worked through it. \nHow lovely this feeling was’ (Neha)\n\nPage 11 of 15\nKaravadra et al. BMC Women’s Health          (2025) 25:319 \n \nDiscussion\nThe GT generated by this study helps to explicate the \ncontexts underpinning women’s experiences of diagnosis \nof endometriosis, and how they influence time to diag -\nnosis, capturing a fluctuating life as women experience, \nmake sense of and investigate their symptoms. The theo -\nretical framework proposed provides a tool for profes -\nsionals and those affected by endometriosis to facilitate \nunderstanding of the complex interplay of context, rela -\ntionships and self-perception involved in help-seeking \nbehaviour and ultimate diagnosis.\nDelay to diagnosis of endometriosis due to procedural \nreasons may occur during the protracted time the medi -\ncal system takes to work up to a diagnosis, for example \nin the process of a differential diagnosis. However, our \nfindings highlight that avoidable social delay appears to \nbe equally, if not more, impactful, often occurring at the \nhands of important others who may reassure women that \ntheir symptoms are normal, dismiss their attempts to dis-\ncuss distressing symptoms as ‘making a fuss’ and actively \nrebuff their efforts to make sense of what is happening to \nthem. The experience of symptom normalisation prior to \nseeking medical help is widely reported in the literature \n(Facchin et  al., 2018; Grundström et  al., 2016), occur -\nring both from the perspective of self-normalisation by \nwomen and by others (Ballard, Lowton & Wright, 2006; \nPugsley & Ballard, 2007; Ghai et al., 2020). Cole, Grogan \nand Turley (2020) highlight that self-silencing of symp -\ntoms can occur in response to the way in which other \npeople respond or normalise symptoms, which was also \nstrongly evident in our study. Self-normalisation of symp-\ntoms of endometriosis as an expected part of menstrua -\ntion is evident in our findings, especially if the symptoms \ndo not unduly impact their daily lives and their quality of \nlife remains intact. This resonates with Manderson et al. \n(2008), who suggest that, regardless of menstrual experi -\nences, all women will identify menstrual-related pain as \nnormal within the context of their own life. The result of \nthis ‘normalisation’ of symptoms in our participants was \nthat women did not initially recognise their symptoms as \nabnormal, which led to many considering themselves as \nweak, perceiving social stigma and questioning the cred -\nibility of their own evidence, ultimately impacting nega -\ntively on their investigating behaviour and consequent \ntime taken to achieve diagnosis.\nNormalisation and dismissal of symptoms of undiag -\nnosed endometriosis are also evident in participants’ \nexperiences with health professionals, particularly doc -\ntors, when they attempt to make sense of and seek help \nfor their symptoms. This finding resonates with studies \nin which the power dynamic between a patient and cli -\nnician is recognised through clinicians holding power \nthrough the acts of diagnosing, prescribing, referring to \nspecialties, and treating (Whitehead, 2007; Rees, Ajjawi \n& Monrouxe, 2013; Nugus et  al., 2010). Through inter -\nviews with 26 women with endometriosis, Young, Fisher \nand Kirkman (2019) identified that women are aware \nof the power doctors have over their wellbeing and are \nstrongly influenced by their doctor’s views as well as their \nown views about their symptoms. Bontempo (2025) uses \nthe term ‘symptom invalidation’ in her conceptual study \nof women with endometriosis to describe “the process by \nwhich an individual is told they are wrong in their beliefs \nabout their symptoms and/or are told they have ulterior \nmotives for seeking care. ” Our findings highlight that the \nimpact of ‘symptom invalidation’ can be that women with \nsuspected endometriosis feel dismissed, disempowered \nand lacking in confidence in the credibility of their symp-\ntoms. Healthcare professionals, particularly doctors, \nshould be encouraged to consider their own pre-concep -\ntions about the symptoms with which women present \nand the impact these may have on their clinical reasoning \nand decision-making.\nHealthcare professionals are often unaware of their \nposition of power within the clinical encounter, mean -\ning that they do not actively seek to address or mitigate \nit (Nimmon & Stenfors-Hayes, 2016). This is important, \nas our study demonstrates that when women with endo -\nmetriosis experience invalidation from healthcare pro -\nviders, healthcare-related behaviour can be influenced \ndetrimentally as they may perceive this invalidation as \nconfirming their own lack of legitimacy in seeking help, \ntherefore moving them back to a context of strong disbe -\nlief and further delaying diagnosis, as evidenced by Faye, \n“I didn’t go back for years. ” It is therefore vital that clini-\ncians reflect on how they recognise and manage a poten -\ntial imbalance of power in their clinical encounters with \nwomen with suspected endometriosis and act to mini -\nmise the impact of this on the outcome of their clinical \nconsultations.\nWithin the primary care context, clinicians are required \nto consider a wide range of differential diagnoses in the \nprocess of clinical assessment (De Silva, Dixon & Veka -\nria, 2024) and as such, given the non specific nature of \nendometriosis-related symptoms, diagnosis can be chal -\nlenging (Dixon et al., 2024). A recent New Zealand based \nstudy [17], found through their survey of General Prac -\ntitioners that patients were referred to secondary care if \nprimary care treatment did not work. However, the quali-\ntative methodology of our study provides a more nuanced \nunderstanding of how women’s relational power within \nthe clinical encounter and self-belief impacts on their \nhealth seeking behaviour, influencing clinicians’ deci -\nsion making and, therefore, time taken to diagnosis. Our \nfindings demonstrate that a clinical encounter in which \na woman is listened to, believed and her challenging \n\nPage 12 of 15Karavadra et al. BMC Women’s Health          (2025) 25:319 \npersonal journey acknowledged, provides a sense of \nvalidation and value that enhances the credibility of a \nwoman’s illness and legitimises both the impact of endo-\nmetriosis on the adjustments that may be needed in her \nlife and her help-seeking behaviour. To be diagnosed with \nendometriosis requires healthcare professional belief and \nvalidation, as they are the ‘gatekeepers’ to diagnosis and \ntherefore hold significant power in women’s experiences \nof diagnosis.\nWhen faced with unexplained symptoms of undiag -\nnosed endometriosis, our participants initially perceived \ntheir symptoms to be at no or ‘low risk’ of causing harm \nto their bodies, meaning that their propensity to seek \nhelp was low, therefore delaying medical investigation \nand diagnosis. Moreover, it appears from our findings \nthat when women first present to a GP with endometri -\nosis-related symptoms, some are unlikely to have made \nsense of their bodily experiences and therefore may find \nit challenging to articulate these experiences meaning -\nfully to a clinician. Evidence suggests that when an indi -\nvidual experiences a symptom, they may not recognise \nthe symptom(s) as a problem (Smith, 2005; de Nooijer, \nLechner & de Vries, 2001). Andersen et al. [3] argue that \nfor a bodily sensation to be defined as a symptom, the \nindividual needs to undergo a process of interpretation in \nrelation to their social context. This notion is supported \nby Manderson et  al. (2008) who describe the change in \nmeaning ascribed to menstrual pain in women with \nendometriosis from ‘normal’ to ‘abnormal’ as engender-\ning a more fundamental reconstruction of self and social \nidentity. They describe this shift in meaning as a ‘circuit \nbreaker, ’ an event or experience that facilitates a change in \nhow a woman makes sense of her menstrual symptoms, \nallowing her to see them as associated with abnormal \npathology rather than ‘normal’ womanhood (Mander -\nson et al., 2008). Key ‘circuit breakers’ in this qualitative \nstudy of 41 Australian women with endometrosis were \nidentified as intercession by significant others, social \ndisruption, biographic disruption and self-recognition \n(Manderson et  al., 2008). These findings resonate with \nthe experiences of participants in our study, although it \nwas evident that the process of symptom interpretation \nvaried for each woman and was strongly influenced by \nsocial circumstances and relationships, particularly when \nsymptoms initially appeared during adolescence. Circuit \nbreakers could be facilitated by healthcare profession -\nals caring for children and young people, and pastoral \nteams within the school environment, by providing clear \ninformation about the symptoms of endometriosis for \nall young women during their teenage years. Rhandawa \net  al. (2021) found that the majority of adolescents in \ntheir study had no knowledge of endometriosis, resonat -\ning with our study and highlighting health literacy as key \nto young women recognising their bodily experiences as \nabnormal, even if they do not associate them with endo -\nmetriosis. Open discussion and education about endo -\nmetriosis by professionals would not only legitimise their \nexperiences but may also be a catalyst in initiating help-\nseeking behaviour.\nOur findings illustrate that the journey to diagno -\nsis starts with women with undiagnosed endometrio -\nsis sensing that ‘something is not right’ with their body. \nEngman (2019) explains that for those individuals who \nhave experienced a physical impairment since birth, this \nimpairment will have been embodied and embedded into \ntheir sense of self over the course of their lives. How -\never, for those women where a critical situation (such as \nchronic pelvic pain) occurs during their teenage years \nor later, then their existing embodied self will be chal -\nlenged, necessitating a renegotiation of self. Embodied \nself is a term used to describe the inseparable unity of \nbody and mind, emphasising the impact that a change \nin one can have on the other; embodiment is the way in \nwhich the embodied self engages with and experiences \nthe world they inhabit; both concepts stem from the \nwork of philosopher Maurice Merleau-Ponty [28]. Piran \n(2017) explored the experiences of embodiment in girls \naged between nine and fourteen and described three \n‘domains’ that influence embodiment: physical, psycho -\nlogical and social. Our findings highlight the impact of all \nthree components on female embodiment, in particular \nhow the power and influence of social relationships can \nimpact women’s psychological response to their physi -\ncal symptoms, as women move through (and oscillate \nbetween) the four contexts on their journey towards \ndiagnosis, which often starts in their early teenage years. \nThe disruption to the sense of embodied self experienced \nthrough the symptoms of suspected endometriosis is \nseen to be further exaggerated in our study by normali -\nsation of symptoms by significant others and healthcare \nprofessionals, which leads to women questioning their \nown relationship with and confidence in themselves and \ntheir bodies. This experience impacts significantly on \nself-perception and female identity as women perceive \nthemselves as weak for not being able to deal with ‘nor -\nmal’ female reproductive processes. It is likely that con -\nsequent reduction in their perception of risk of harm \nfrom their symptoms and commitment to coping strate -\ngies that avoid recognising that they have problem might \ninhibit help seeking behaviours (formal or informal) and \ndirectly contribute to a delay in diagnosis.\nStrengths and limitations\nThe extant literature tends to focus on individual fac -\ntors associated with delay to diagnosis in endometrio -\nsis, rather than how factors work together to influence \n\nPage 13 of 15\nKaravadra et al. BMC Women’s Health          (2025) 25:319 \n \ninvestigating behaviour and subsequent diagnosis. This \nstudy provides important new insight into the complex \ninterplay of relational, social and psychological factors \ninfluencing delay to diagnosis of endometriosis, reflecting \nthe value of adopting the qualitative research methods \nused.Transferability of the findings from this study may \nbe limited by most participants being Caucasian, only \nable to converse in English and recruited from the East \nof England. It could be argued that the sample reflected \nthe regional population, but it is possible that the lim -\nited diversity in the sample may mean that theoretical \nsaturation was reached earlier than might have been the \ncase with a more diverse sample population. These fac -\ntors partly relate to the study being undertaken as part of \nunfunded doctoral research. Although participants were \naged 18 or above, thereby excluding young women under \n18, all participants were able to reflect back on how their \nexperiences changed over time, including during their \nadolescence.\nConducting interviews within a private room in a hos -\npital environment may have meant that participants \ndid not feel as comfortable to discuss their experiences \nas they may have done in a more neutral location or in \ntheir own homes. It is also possible that the position of \nthe researcher as a registrar in obstetrics and gynaecol -\nogy was known to the participants and this may have \ninfluenced their responses during the interviews. How -\never, participants appeared to be sufficiently comfort -\nable to share in-depth thoughts and reflections about \ntheir experiences, as illustrated in the verbatim quota -\ntions included. The identify of BK as both clinician and \nresearcher may also have influenced his interpretations \nduring data collection and data analysis, although this \nwas anticipated by the research team and mitigations \nput in place, as described in the Methods section of the \npaper.\nImplications and future research\nAt present, there is no agreed definition for what con -\nstitutes ‘delay’ to diagnosis of endometriosis in terms \nof timeframe. Consensus should be sought from clini -\ncians, patients and public involvement and other relevant \nstakeholders to clearly define delay to diagnosis. Further \nqualitative research to explore the delays to diagnosis in \nnon-Caucasian populations should be considered, a rec -\nommendation supported by the findings of a pilot cross-\nsectional survey by Manderville et al. [27] in which black \nwomen with endometriosis identified high levels of per -\nceived stigma and discrimination when interacting with \nthe healthcare system.\nCrucial to the process of diagnosis is the moment of \nvulnerability when a woman recognises their bodily \nexperiences as abnormal and seeks medical attention \nfor the first time. This is a critical moment, in which \nthe clinician can have a major influence on the progres -\nsion of or delay to diagnosis. It is vital, therefore, that \nclinicians recognise and are aware of this influential \nmoment and the impact that they can have on a wom -\nan’s propensity to seek medical help and consequently \nany delay to diagnosis. Taking time to build rapport \nand actively listen to women will encourage them to \ndisclose their symptoms, even if initially embarrassing, \nwhile adopting an holistic approach will allow them to \nexpress the impact of their symptoms on the quality of \ntheir life, thereby providing the clinician with greater \ninsight to inform differential diagnosis and further \ninvestigation. This open approach to communication \ncould also be adopted in the workplace, with aware -\nness of endometriosis and the considerable and unpre -\ndictable impact it can have on women promoted with \nemployers to enable them to offer appropriate support \nand adjustment in the working environment. Whilst \nmenstrual education has been introduced to schools in \nEngland, further interventions are required to educate \nyoung people and schools about normal menstruation \nand differentiating it from abnormal.\nThe findings from this study help to illustrate that a \nwoman’s first medical consultation can negatively influ -\nence her future health-seeking behaviour if she per -\nceives healthcare professionals to be dismissive. It is \ntherefore vital that primary care clinicians are aware \nof the importance of the ‘first consultation’ during \nwhich women may present with signs and symptoms \nof endometriosis. Clinicians have an important role in \nhelping women to recognise the signs and symptoms \nof endometriosis using appropriate language and sup -\nportive resources. It is also important for clinicians in \nparticular to have an awareness of symptom normalisa -\ntion and use a biopsychosocial approach to medical his -\ntory taking with women with suspected endometriosis. \nWhilst there is a role for self-management in patients \nwith endometriosis [34], more supported and engaging \nstrategies could be developed.\nConclusions\nUsing CGT we were able to explore how women’s expe -\nriences of endometriosis are influenced by the contexts \nthrough which they oscillate in their journey to diagno -\nsis of endometriosis, influenced by a complex interplay \nof relational power, self-perception, recognition of risk \nand investigating behaviour. The journey to diagnosis is \nmultifactorial and requires sensitivity, understanding and \na commitment to listen and value women’s experiences \nwithin the clinical consultation to ensure timely and \nappropriate investigation and management.\n\nPage 14 of 15Karavadra et al. BMC Women’s Health          (2025) 25:319 \nSupplementary Information\nThe online version contains supplementary material available at https:// doi. \norg/ 10. 1186/ s12905- 025- 03869-y.\nSupplementary Material 1.\nAcknowledgements\nWe thank all the participants who kindly offered their time in participating in \nthe study. We would also like to thank Dr Andrea Stockl who provided advice \non the initial design of the study.\nAuthor contributions\nBK conceived the study, obtained ethical approval and led the study design, \nconduct, analysis and manuscript writing. GT was involved in the design, \nanalysis of findings and manuscript writing. JS and EPM were involved in study \ndesign and manuscript writing. All authors approved the final version of the \nmanuscript.\nFunding\nThis research received no specific grant from any funding agency in the pub-\nlic, commercial, or not-for-profit sectors.\nData availability\nThe datasets used and/or analysed during the current study are available from \nthe corresponding author on reasonable request.\nDeclarations\nEthics approval and consent to participate\nOur study was approved by the London-Surrey Borders Research Ethics \nCommittee via the Integrated Research Application System (IRAS) (approval \nno. 223380). All participants provided written informed consent prior to enrol-\nment in the study, and this was obtained by BK. This study was conducted in \naccordance with the ethical principles outlined in the Declaration of Helsinki.\nConsent for publication\nNot applicable.\nCompeting interests\nThe authors declare that they have no competing interests.\nReceived: 29 March 2025   Accepted: 17 June 2025\nReferences\n 1. 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