“Belittled” and “Broken”: Distressing Medical Interactions in Endometriosis Healthcare: A Mixed Methods Study

Distressing medical interactions appear common during endometriosis healthcare; however, the types, prevalence, and impacts are not well understood. 468 people with endometriosis completed an online survey about distressing medical interactions and potential impacts. Following template and content analysis, 80.8% of the sample reported distressing endometriosis-related medical interactions. These events represented two themes: Distressing Procedures (experienced by 30.6% of the sample), and Harmful Communication (64.1%). Of those who experienced these distressing interactions, 79.4% reported impacts to their care seeking. Interactions most often occurred with general practitioners and gynecologists. Trauma-informed, patient-centered endometriosis care is needed, focusing on individualized care, believing patients and avoiding damaging communication and behaviors, to prevent psychological harm.

Endometriosis is a chronic health condition in which endometrial-like tissue grows outside of the uterus, which may result in dysmenorrhea, heavy menstrual bleeding and irregularities, dyspareunia, sub- or infertility, and abdominal bloating (Australian Institute of Health & Welfare, Citation2023). Endometriosis predominantly affects women and people assigned female at birth (AFAB) with current prevalence estimates of 1 in 7 Australian women (Australian Institute of Health & Welfare, 2023) and 1 in 4 trans men impacted (Okita et al., Citation2021); however, data is lacking for prevalence in other gender diverse and intersex people. Australian figures place diagnostic delay between 6.4 and 12.3 years (Mosterd et al., Citation2025; O’Hara et al., Citation2022). Diagnostic delay has been associated with worsened disease condition, increased health care costs and utilization, and adverse effects on fertility (Beloshevski et al., Citation2024; De Corte et al., Citation2025; Mishra et al., Citation2025). Research has examined factors which may influence diagnostic delay such as limited endometriosis-related knowledge and pain normalization (Ballard et al., Citation2006); however, there is a lack of understanding of medical experiences that may be distressing and whether these may potentially influence care seeking and diagnostic delay, leading to worsened disease experiences. Distressing medical interactions, such as being dismissed as emotional or exaggerating, are commonly experienced by women during healthcare encounters (Khan et al., Citation2024). Such interactions can at least be partially attributed to a historically patriarchal medical system and perceptions of women’s health issues as being associated with ‘female hysteria’ rather than a physical cause (Krebs & Schoenbauer, Citation2020), resulting in systematic medical inequalities (Khan et al., Citation2024). A qualitative study of interactions between endometriosis patients and general practitioners (GP’s) noted distress associated with disbelief of symptoms, gatekeeping of referrals, negative attitudes toward ‘women’s problems’ and a focus on childbirth as a means of treatment, which they labeled as ‘GP trauma’ (Cox et al., Citation2003). Eder and Roomaney (Citation2024) examined the medical care experiences of trans and gender diverse people with endometriosis, with many participants reporting misgendering, invalidation and medical gaslighting. Medical gaslighting involves health care providers unduly imposing their beliefs or opinions onto a patient in a manner which invalidates the patients experiences and can lead to self-doubt (Fuss et al., Citation2024). Eder and Roomaney (Citation2024) indicated that sources of medical gaslighting include normalizing pain, presenting limited treatment options or those which the patient does not agree with, focusing on fertility instead of the patients’ needs, and blaming the patient for their endometriosis symptoms. This distress was associated with avoidance of healthcare, increased diagnostic delays and barriers to treatment and symptom management (Eder & Roomaney, Citation2024). Potential consequences of distressing healthcare interactions may also include a loss of trust in healthcare professionals, and greater psychological distress and pain (Cetera et al., Citation2024; Requadt et al., Citation2024). The participants in Eder and Roomaney (Citation2024) study explained that distressing medical experiences often resulted in symptoms of medical trauma and in some instances Post-Traumatic Stress Disorder (PTSD). Medical trauma refers to a negative psychological and physiological reaction in response to a medical event (Flaum & Hall, Citation2013; International Society for Traumatic Stress Studies, Citation2023). PTSD can occur following exposure to medical trauma; however, not all individuals who experience traumatic medical experiences will develop PTSD (Flaum & Hall, Citation2013). These distressing and potentially traumatic experiences have led to a call for a greater focus on the importance of the patient-practitioner alliance in endometriosis care and a greater emphasis on trauma-informed, patient-centered care (Cetera et al., Citation2024; Whitmore et al., Citation2023). Although research examining difficult and distressing experiences associated with accessing endometriosis-related healthcare has increased, understanding the consequences of these events on current and future care utilization is required. Furthermore, a greater understanding is needed of the range and potential severity of distressing medical events experienced by individuals with endometriosis to inform curriculum and training guidelines. As such, the current study asks the following questions: 1) What forms of distressing medical events are experienced by people with endometriosis? 2) How prevalent are these events? 3) Do these experiences affect care, treatment, and seeking diagnosis?

Design and Participants An online, cross-sectional survey (see Appendix 1) was conducted with 468 participants who were recruited online via social media and websites of Australian endometriosis and pelvic pain organizations and online endometriosis support groups. Recruitment for the current study occurred between September and December 2023. Participants met the inclusion criteria of 1) a self-reported clinical, ultrasound or surgical diagnosis of endometriosis, 2) aged 18 years or older; and 3) residing in Australia. Participants were excluded if they did not meet the above inclusion criteria and there were no other exclusion criteria. Measures Health and Demographic Information Demographic data included age, gender identity, sexual orientation, relationship status, ethnicity, Aboriginal or Torres Strait Islander identity, education, employment, children, region (metropolitan, regional and rural) and personal income. Participants provided endometriosis health-related data including disease stage, and diagnostic method. Distressing Medical Interactions An open-ended question was used to gather data regarding participants’ experiences when engaging in endometriosis-related healthcare: “Sometimes people can feel emotionally or physically uncomfortable or unsafe during or after experiences with medical procedures and/or professionals. If you have felt like this during or after an interaction with a medical professional regarding endometriosis, please elaborate on that scenario and how you felt below, if comfortable to do so.” Effect on Care, Treatment or Diagnosis Seeking An open-ended question was used to gather data regarding any potential effects that difficult or distressing endometriosis-related medical interactions may have on participants seeking future endometriosis-related care, treatment or diagnosis: “How did those experiences affect you seeking assistance, diagnosis, or treatment, if at all?”. PTSD Diagnosis Categorical data was collected on a self-reported diagnosis of PTSD (yes, no, in process of being diagnosed), and whether this diagnosis was associated with endometriosis-related experiences (yes, no, partially). The ‘partially’ option was included to account for the potential for PTSD to occur from a combination of multiple experiences (both medical or non-medical) (Flaum & Hall, Citation2013). Data Analysis The quantitative data is presented descriptively to inform an understanding of the study sample’s endometriosis-related health demographics and experience of posttraumatic distress. A phenomenological approach was used to understand participants lived experiences (Husserl, Citation2012; Willig, Citation2013). A critical realist ontological approach incorporates both positivist and constructivist approaches and was chosen for its ability to understand the complexity of events through qualitative explanations with additional quantitative means adding deeper understanding, whilst recognizing that researchers cannot have an independent perspective (Braun & Clarke, Citation2022; Lawani, Citation2021). These perspectives allowed the researchers to describe the experiences of participants, whilst acknowledging that their own ideas and theories are not independent to the resultant themes. Qualitative analysis of healthcare interactions responses was conducted using template analysis, via Microsoft Excel (Brooks et al., Citation2015). This analysis was chosen for its suitability to survey data, a large number of themes and ability to apply content analysis (Braun & Clarke, Citation2022; Brooks et al., Citation2015). Template analysis also allows for a range of epistemological and ontological positions, including phenomenological and realist approaches, and recommends researchers critically examine how their experiences and theories may influence analysis (Brooks et al., Citation2015). First, DM conducted data familiarization and preliminary coding of the data, with SE, LVN, and AMW reviewing preliminary coding. Then DM and LVN organized the emerging themes into clusters, followed by DM and SE further refining the clusters and additional refinement by DM, AMW, and LVN. DM defined the initial coding template and applied to the dataset then DM, SE, and AMW further modified the template. Template analysis was also used for its unique iterative theme development (Brooks et al., Citation2015). Following the application of the final qualitative template to the data set, content analysis was conducted to assess the prevalence of each distressing medical event. Ethical Considerations Ethics approval was received from an Australian university. Informed consent was obtained, and participants were provided the contact details of Lifeline and Beyond Blue for mental health support if the survey material was distressing for them. This study was a part of a larger survey examining endometriosis diagnostic delay. Rigor and Reflexivity The Standards for Reporting Qualitative Research (SRQR) guidelines were adhered to. The researchers who read, coded, and interpreted the data set included people with and without endometriosis, as well as people with past experiences similar to those of the themes. Survey questions were developed in consultation with a clinical psychologist and consumer representative with lived endometriosis experience who provided feedback on wording that was perceived to be safe and validating. The research team also included psychologists and a gynecologist who provide clinical care to people with endometriosis.

Sample Demographics Most of the sample identified as women (94.7%), with 3.8% non-binary people, 0.6% gender fluid people, 0.4% trans men, and 0.4% preferred not to answer. The sample had a mean age of 34 years (range = 18–63, SD = 8.3). Participants mostly identified as being of an Australian ethnicity (78.4%), with 2.8% of those identifying as Aboriginal. Health Demographics Participants predominantly self-reported Stage 4 endometriosis (35.0%) diagnosed via laparoscopy (86.1%). One hundred participants (21.4%) reported they had been diagnosed with PTSD, with an additional 10 participants (2.1%) reported being in the process of diagnosis. Seven participants (6.4% of those diagnosed and in the process of diagnosis) reported this was a result of endometriosis-related events or experiences, 40 (36.4%) stated this diagnosis was partially due to endometriosis-related events or experiences, and 63 (57.3%) reported no relation to endometriosis. Themes Content analysis Showed that 80.8% of the sample reported experiencing some form of difficult or distressing endometriosis-related medical interaction, ranging from physical or emotional discomfort, to a perceived lack of emotional or physical safety, or emotionally or physically traumatic events. The two types of negative interactions, their associated reported consequences and their prevalence are described in the qualitative themes below (see ). Negative experiences were mostly related to interactions with GP’s, gynecologists, ultrasound technicians, and emergency department doctors and nurses. Qualitative Themes Theme 1. Distressing Procedures – 30.6% As seen in Supplementary Table 1, participant responses reflected a sense of vulnerability associated with having to engage in gynecological procedures as part of endometriosis assessment and management (e.g., transvaginal ultrasounds, intrauterine device (IUD) insertion or removal, vaginal examinations, pap smears). Perceived vulnerability was associated with the level of sensitivity and care demonstrated by the practitioner and the provision of information regarding the reasons for, and steps associated with, the given procedure. Participants reported experiencing internal gynecological procedures and examinations that were painful, occurred without their informed consent, triggered memories of sexual trauma, or resulted in emotional distress and avoidance of further gynecological care. Vulnerability was connected to a range of emotional responses associated with endometriosis-related care such as “embarrassment,” “humiliation,” or “shame.” Vulnerability was also noted to be connected to a sense of trust and safety, particularly for gynecological procedures requiring general anesthesia. Physical and emotional vulnerability was reflected in participant accounts, with endometriosis-related assessment and management requiring the individual to “trust people with my body.” Lack of Informed Consent: 17.5% Participants described undergoing medical procedures where they were not provided with an opportunity to provide informed consent. This included undergoing gynecological or surgical procedures where the practitioner did not adequately describe the reason for the procedure, what the procedure would involve in sufficient detail, or provide sufficient time for the patient to ask questions. Explanations containing medical terminology or jargon were associated with confusion for some participants. For example, some participants indicated that internal examinations or transvaginal ultrasounds had been performed when they had expected that examinations would be solely external, others reported not providing consent or agreeing to procedures under a sense of coercion. I didn’t know what a transvaginal ultrasound was and was very uncomfortable when a male doctor shoved a cold, wet stick up my vagina. (22-year-old woman) Participant responses also reflected exposure to medical procedures (e.g., fertility treatment, IUD insertion) after informed consent had been withdrawn, resulting in physical pain and emotional distress. This included reports of being physically restrained by medical professionals or having procedures completed while anesthetized and unable to provide informed consent. The second was during an embryo transfer. I was in extreme pain and asked for the procedure to be cancelled. The doctor advised two nurses in the room to hold my limbs and proceeded, despite me begging him to stop due to the pain. All future transfers were done under anesthetic. (46-year-old woman) Participant responses also referred to the unexpected presence of medical students during gynecological procedures, with consent to their presence or involvement in the procedure not sought by the primary practitioner. The interaction between the primary practitioner and medical student was associated with a range of responses from feeling uncomfortable asking questions, to reporting physical or emotional discomfort and distress. It was an extremely de-humanizing experience. The surgeon was teaching a medical student and used my pelvic exam/my body as a teaching moment/instrument, but did not ask for my consent to do so, and did not ask about my comfort during the procedure despite reporting severe chronic pelvic pain. In fact, the surgeon did not even acknowledge my existence during the exam … I was not provided the opportunity to ask any questions about my upcoming laparoscopy. (32-year-old woman) Fourteen participants indicated that gynecological procedures such as transvaginal ultrasounds and pap smears, were distressing as they triggered memories of sexual abuse or assaults, resulting in difficulty communicating with the practitioner or providing and/or withdrawing informed consent. Participant accounts reflected the need for key aspects of trauma-informed care such as having a support person present during examinations or procedures, access to same-gender practitioners, and ongoing verbal communication regarding consent. Considering the alarmingly high statistics of sexual assault and abuse, anyone who deals in working with matters so personally invasive should be at MINIMUM trauma informed and at best be able to ask the correct questions and make sure the patient feels comfortable and safe. (22-year-old non-binary person) Painful Procedures: 19.9% The experiences of internal examinations and procedures (e.g., transvaginal ultrasound, IUD insertion or removal, catheter insertion) associated with endometriosis assessment and management were linked to the experience of physical pain and emotional distress. Pain and distress were associated with the manner and behavior of the practitioner, with participants reflecting that practitioners could be overly “rough” or “rushed.” Participants noted those painful experiences were exacerbated by insensitive comments, minimization, or poor bedside manner on the part of the practitioner, leading to difficulties with participants expressing their needs or discussing ongoing consent. Some participants indicated that exposure to painful procedures as part of their endometriosis-related assessment and management resulted in a belief that care meant having to experience pain. IUD removal by apparent endo specialist whilst awake- he gave me no warning when he was going to remove it or if it would be painful. I screamed when he pulled it out (there was chunks of my internal tissue on the IUD). He then said I was just “sensitive,” and most women have zero pain. (30-year-old woman) While medical procedures associated with endometriosis care may lead to some physical discomfort or pain, it is important to note that practitioners’ methods and communication can assist in ensuring that discomfort and pain are minimized as much as possible. I’ve noticed a huge improvement this year when I’ve had tests done, things such as being asked multiple times if I consent, I’ve been given the option to have a female staff member present or a female Doctor, I’ve also been given the option to guide ultrasound wand for internal ultrasound and these have all made me feel safe and the procedures less painful. (30-year-old woman) Physical Violation: 6.0% Some experiences went beyond pain and described a sense of physical violation. For example, three participants indicated that the medical practitioner had inserted a speculum and then left the room without explanation, leaving participants in pain and emotionally distressed. For some, physical violations were described as equivalent to assault: He then did a speculum exam, despite the pain, he left the speculum inserted in my vagina and went away to answer a call. He took over five minutes to come back and it left me in so much pain, traumatized and embarrassed. I lost all my dignity and he had not listened to the pain I was in or he was causing. (38-year-old woman) Theme 2. Harmful Communication: 64.1% As seen in Supplementary Table 1, participant responses reflected distress associated with the ways in which practitioners conveyed health-based information during endometriosis-related interactions, with many citing leaving consultations feeling disbelieved, belittled, blamed for their symptoms, or labeled (e.g., as an attention seeker or drug seeker). Respondents also reflected on comments that appeared to be based on “generic” endometriosis-related knowledge or assumptions rather than their unique circumstances, the practitioner’s belief system regarding gender and/or sexuality (rather than the patients) or based on personal characteristics rather than the disease itself. The comments made by medical practitioners were associated with a sense of disparate treatment and gatekeeping of potential treatment referrals and options. Participants cited these communications as resulting in harm and contributing to a reluctance to seek further endometriosis-related care, adding further to their physical and emotional distress. He told me that I wasn’t in enough pain to warrant doing anything to help me. (36-year-old woman) Belittled: 9.8% Participant responses cited numerous instances of practitioner comments that undermined participants’ verbal accounts of their pain levels and/or their physical and emotional coping resources, resulting in participants feeling belittled. Examples of belittling comments also included being laughed at when describing endometriosis-related symptoms or the patient’s preferred treatment options. Participant comments also reflected a sense of being viewed as physically or emotionally weak by the practitioner or lacking in the ability or intellectual capacity to understand what the practitioner was saying. The comments were often gendered and resulted in participants doubting themselves and losing trust in the medical professional. When I walked into the operating room he [Gynecologist Surgeon] was doing paperwork and asked me how long I needed the medical certificate to be. I told him I did not have a job, a fact I had told him during my first appointment. He laughed and said “that must be nice, I’ll swap you, I’d love to sit around all day and do nothing. (48-year-old woman) Blamed: 2.8% Participants reflected that comments made by practitioners during endometriosis-related appointments resulted in them feeling that they were to blame for endometriosis symptoms, or personally responsible for a lack of symptom improvement or treatment efficacy. These comments were distressing as participants reflected that they had tried a variety of endometriosis-related treatments and would not be “choosing not to get better.” I have also experienced unwelcome advice from an ultrasound operator, who insisted on telling me that I could cure my Endometriosis by eating a vegan diet. I found this really upsetting, as it implied that the illness was self-imposed through unhealthy eating. And funnily enough I had been a vegan for 12 years and I still had endo. (36-year-old woman) Gaslighting, Dismissal, and Gatekeeping: 60.0% Comments reflecting dismissal, gaslighting, and gatekeeping were the most common distressing endometriosis-related experiences reported by the current sample. Harmful communication here was reflected in practitioner comments that reinforce inaccurate information regarding menstrual symptoms, gender-based assumptions, or unhelpful comments such as period pain being “normal,” pain not being “as bad” as the patient was indicating or that participants should “live with the pain” as “part of being a woman.” Participants indicated that these types of comments led them to question their sanity and their experience of pain and other endometriosis-related symptoms, or to feel that they were not listened to or believed, reflecting the occurrence of gaslighting. Told I was just experiencing heavy periods, it’s normal. Pain all the time is normal for a woman. Put down. Made to feel stupid. …Many medical appointments have left me very sad, depressed, frustrated and at times just wanting to no longer be here. (52-year-old woman) Participants felt dismissed when their symptoms were attributed to other physical conditions rather than endometriosis, with medical professionals refusing to investigate a gynecological cause. Participants reported experiences of medical gatekeeping including refusing to prescribe adequate pain medications, GPs not writing referrals to gynecologists and not conducting testing, such as ultrasounds. These experiences left participants feeling unheard and uncared for by their medical professional, leading to further reluctance to seek subsequent endometriosis-related care. I was often dismissed when I would seek medical help for an inability to conceive, even after 3 years of trying. Even at the age of 31, I was refused a referral to a specialist, as it was the doctor’s opinion that I was young and healthy and had plenty of time up my sleeve. (42-year-old woman) Treatments were also gatekept from participants and their pain and preferences were dismissed, such as when participants were told to give birth as treatment. After my initial surgery when the [gynecologist] told me nothing was there and to have babies as my solution. This is not a solution – financially, and that’s a huge commitment to make (plus it is untrue). I felt embarrassed, I felt helpless, I felt invalidated. (32-year-old woman, diagnosed at secondary surgery) Further dismissal occurred when participants who spoke to their doctor about painful sex due to their endometriosis were told to drink alcohol as a solution. This suggestion was distressing for participants because it implied that the participant’s pain was not valid, and it felt like inadequate care from the medical professional. She asked me if sex was painful, when I said yes she said I should drink alcohol beforehand to relax. (51-year-old woman) Attributing Symptoms to Mental Health or Drug-Seeking:– 9.6% This sub-theme refers to the particular way that healthcare professionals dismissed and invalidated suffering related to endometriosis as psychological or drug seeking was felt to be a particular way that healthcare professionals dismissed and invalidated suffering related to endometriosis. Participants reported that, while their psychological well-being was an important consideration when living with a persistent health condition such as endometriosis, depression, and anxiety should not be described as the cause of pain and other symptoms. Helpful communication was seen as the practitioner providing a balanced view regarding the potential relevance of mental health supports based on the individual’s circumstances. Similarly, participants indicated that presentation to the emergency department when they were experiencing severe uncontrolled pain was associated with harmful and distressing judgements regarding resource use, and drug seeking, leading the person to question their knowledge of their body and coping skills. When I arrived, I was taken into a room with 2 GPs who accused me of drug seeking and threatened reporting me to Medicare for seeking opioids and to ban me from being prescribed any such medication. It was humiliating, terrifying and degrading… Another time a very pregnant (only mention this because we discussed my infertility and she thought I shouldn’t be upset because that was what nature intended for me) ED Dr told me I should seek psychiatric help about my pain. (51-year-old woman) Judgements Based on Personal Characteristics: 5.3% Participants described being subjected to comments that reflected practitioners preconceived beliefs regarding weight, race, gender, sexuality, or age, rather than evidence-based health-related information. For example, participants were advised that they were “too young,” or “too old” to have endometriosis or that their weight was the problem and consequently denied medical treatment. I was once told by a gynecologist that if I stop eating Indian food this would help stop my pelvic pain. When I told him I don’t eat Indian food he then asked what nationality I was, referring to the color of my skin. (31-year-old woman) He also criticized my weight even though I was actively struggling with disordered eating. (19-year-old woman) Other participants advised that assumptions made about their gender or sexuality resulted in distress and a reluctance to seek further endometriosis-related care. Objectified by doctors, reduced to my reproductive ability, the language and terminology made me extremely uncomfortable, repeatedly misgendered, requests not to touch me ignored. Since my surgery I had it removed from my record and I changed GP’s, as my identity is not respected as soon that diagnosis is known. (23-year-old trans man) Insensitive Fertility Comments- 4.1% Participants reported harmful and distressing communication regarding fertility. The cited examples where fertility information was presented without empathy or understanding of how it may be received by the individual, highlighted a lack of understanding of the correlation between endometriosis and infertility, or reflected the practitioners’ personal beliefs. Participant responses indicated that some practitioners perceived infertility as “nature intended” or as “bad luck,” highlighting a lack of understanding regarding the potential importance of fertility for the individual. I went to see a fertility specialist after 5 miscarriages. He continued to raise his eyebrow every time I described a symptom then told me miscarriages are normal, my symptoms are normal and it’s just bad luck. (34-year-old woman) Sexual Comments: 0.6% Three participants experienced sexual comments from medical professionals, including inappropriate comments about the patient’s sex life, comments about patients’ bodies or medical professionals talking about their own sex life. When assessing for symptoms of endo, asked if I bled during or after sex with I said yes both. He then asked me about what sex positions I liked the best (I was 28 he was early 70s). I tried to avoid the question but he constantly came back to it. (30-year-old woman) Sexist Comments: 3.6% Participants reported being asked by medical professionals whether their husband (whether they were married to a man or not) approved of their treatment and lifestyle decisions, such as hysterectomy, IUD use, inability to have penetrative sex, or fertility decisions (1.7%). This particularly affected participants who were child free by choice and participants in same sex relationships. Participants reflected that this resulted in a sense of their personal needs mattering less than their partner’s or a sense of not being able to make autonomous healthcare decisions without the approval of a significant other. Being asked if my husband still loved me despite my inability to have sex due to excruciating pain was one of the worst interactions I have ever had in regards to endometriosis. (30-year-old non-binary person) Participants indicated that practitioners would focus solely on fertility, to the exclusion of their other endometriosis-related symptoms and concerns (2.4%). To participants, this suggested that doctors do not care about their symptoms or quality of life and often reflected sexist ideology that women’s sole purpose is to bear children. This also commonly presented when doctors refused participants treatment which may impact fertility (such as hysterectomy or IUD), which left them feeling invalidated and not treated as a whole person. My ability to produce hypothetical children that I did not want was made to be more important than my quality of life and daily debilitating pain by this specialist. (28-year-old trans man) Effects on Care Seeking Three hundred participants (79.4%) of those who experienced distressing medical interactions indicated that the event/s did affect their care or diagnosis seeking in some way. This predominantly included delaying care for endometriosis-related symptoms or other medical issues, including conditions unrelated to endometriosis or gynecological care. Due to distressing medical events, participants delayed attending GP and gynecologist appointments, undertaking routine testing (such as pap smears), and visiting the emergency room (n = 115). I put off much needed surgery for 15years. (43-year-old woman) Many reported significant levels of anxiety, stress, or fear, often requiring psychological therapy, with some reporting PTSD diagnoses (n = 46). I had panic attacks going into any hospital, I freaked out seeing ambulances, I had incredibly bad flashbacks. I was diagnosed with PTSD afterwards. (18-year-old woman) As seen in the themes above, participants also reported the difficulties in finding a medical professional who would believe and help them, leading to substantial time investments researching doctors and attending appointments, as well as the costs of various appointments. Participants reported the need to thoroughly research doctors, the condition or treatment options prior to attending appointments (n = 12), and a preference for female medical professionals (n = 5). It made me have to research for an adequate, compassionate doctor vigorously. I do not trust medical professionals at all and worry one day I could die or become more disabled from their continued negligence. (28-year-old trans man) Fifty participants (13.2%) did not experience adverse effects to their care seeking following distressing medical events. This involved participants who felt more determined to stand up for themselves and advocate for their own care following negative medical experiences. It’s made me more determined to stand up for my rights as a patient. To push until they fully understand and actually listen. (38-year-old woman) Twenty-one (5.6%) participants reported a mix of effects on care seeking. This included initially delaying care but developing determination to advocate for themselves, needing family members to force them to seek care, and delaying care until symptoms reached a certain level of seriousness or affected fertility. I often dropped the issue with them and would no longer talk about my pain, but eventually I decided to be more assertive. I am now often called feisty or similar terms because I stand up for myself. (21-year-old non-binary person) Seven participants gave no answer.

The present study intended to examine distressing interactions experienced during endometriosis health care and their impacts. A vast majority of participants experienced distressing medical interactions which left them feeling uncomfortable or unsafe. When participants experienced distressing interactions, this generally prevented them from seeking further care or diagnosis, with some participants receiving PTSD diagnoses or describing medical trauma due to endometriosis-related experiences. Many of the identified themes appear to be associated with the patriarchal history and gender biases of medicine where women and people AFAB are often dismissed or not believed, due to a framing of being emotional or irrational (Krebs & Schoenbauer, Citation2020). Dismissal can also be associated with the societal normalization of women’s pain, which extends from this patriarchal history (Krebs & Schoenbauer, Citation2020). These issues lead to women and people AFAB receiving less effective pain relief and more antidepressants and mental health referrals than men (Lidung, Citation2025). The qualitative themes also reflect the lack of endometriosis knowledge by medical professionals (Roullier et al., Citation2021), which may be a result of systematic underfunding and historic unimportance placed on endometriosis and non-obstetrics based gynecology research and education (Ellis et al., Citation2025). As seen in the participant responses, medical professionals can act as both a “healer,” where they are providing the patient with medical care, but also a perpetrator of trauma and pain, creating a confusing duality for patients (Flaum Hall & Hall, Citation2017). As explained by Cetera et al. (Citation2024), “Physicians should always keep in mind that they are not only deliverers of treatment; they are a form of treatment themselves”. Pain during procedures appeared to create this conflicting experience for the participants due to the procedures supposed benefits. A difficult power imbalance between medical practitioners and patients appears to occur due to the perception that the health care system has an authoritarian power (Lidung, Citation2025), which was particularly prominent when participants felt unable to stand up for themselves when wanting to stop painful procedures or receiving care which they did not agree with. Painful procedures often reduced patients’ trust and sense of safety with the medical professionals and prevented participants from seeking care or undergoing such procedures again. This is particularly alarming when participants delay testing, or screening, especially given that people with endometriosis are more likely to develop ovarian, thyroid, and breast cancer (Kvaskoff et al., Citation2021) and are at higher risk of developing cardiovascular disease (Parsa et al., Citation2025). Medical professionals need to adequately inform patients of the nature of procedures and prepare patients for potential discomfort and pain, whilst trying to reduce discomfort (see below). For example, providing a counseling session and instructional supportive brochure prior to gynecological examination has been found to increase patient knowledge, comfort and satisfaction (Ragab Eid et al., Citation2023). A type of harmful communication experienced was practitioner’s describing mental health symptoms as the cause of endometriosis physical symptom(s); however, the evidence currently suggests that mental illness is a consequence or mediator of experiencing these physical symptom(s) (Spinoni et al. Citation2024). Whilst desensitization is often a needed part of medical training and practice in order to build emotional resilience and improve efficiency (Bista & Chand, Citation2023), medical professionals appearing desensitized during gynecological procedures often comes across to patients as “cold” and lacking empathy. It is of great importance for medical professionals to utilize appropriate empathy and validation during these procedures to support their patients psychologically, particularly during uncomfortable procedures, such as vaginal examinations. This aligns with the ideology of person-centered health care, whereby the patient is placed at the center of their own care, seen as experts in their own health, included in decision making, and treated as a whole person, not just a condition (Australian Commission on Safety & Quality in Health Care, 2023, Citationn.d.; Department of Health & Human Services, Citation2011). Such patient-centered care leads to improved safety and quality of healthcare as well as improved patient and staff satisfaction (Australian Commission on Safety & Quality in Health Care, 2011, n.d.). The participant responses reflect a lack of person-centered care utilization, as well as a lack of trauma-informed care, which shares similar core principals to person-centered care (Department of Health & Human Services, 2011; The Royal Australian College of General Practitioners, Citation2022). Trauma-informed care involves first realizing the widespread impact of trauma, recognizing the signs and responding to the widespread nature by incorporating knowledge, policies, practice and procedures which aim to avoid re-traumatization (Sexual Abuse & Mental Health Services Administration, 2014; Swanson & Malhotra, Citation2024). This can be achieved by using the six principles of a trauma-informed approach from the Sexual Abuse and Mental Health Services Administration (Citation2014), by 1) ensuring patients feel safe emotionally and physically, 2) developing trustworthiness with patients and 3) viewing patients as partners in developing treatment. Patients should also be 4) empowered to use their voice and make choices, as well as have 5) peer support made available to them. Finally, medical professionals need to 6) avoid stereotypes and biases. The data suggests that these six principles are not being applied in endometriosis healthcare. Informed consent is also an important aspect of patient-centered trauma-informed care and ensures that a participant is aware of information about a procedure and voluntarily gives consent for the procedure to take place. Trauma-informed care is starting to be implemented in fertility care and gynecological surgery (Price, Citation2024; Swanson & Malhotra, Citation2024; Whitmore et al., Citation2023), showing promising evidence that these practices can also be utilized in endometriosis care. Preventing distressing medical events, via the use of person-centered and trauma-informed care, may assist in reducing mental ill health in people with endometriosis and also improve symptom management and decrease diagnostic delays. Solutions to Prevent Distressing Medical Events Based on participant suggestions and the qualitative themes identified, the following techniques, seen in and , can be used to reduce distressing health care interactions. Strengths, Limitations and Recommendations for Future Research This study presents strengths in its use of the patient voice, an often-overlooked consideration in research of health conditions. The study also presents limitations due to the lack of indication of when the medical events occurred and details about the medical professional, such as the type of practitioner or their age and gender. The present study also relies on retrospective self-reporting. The sample only comprised of people with endometriosis and does not include the perspective of medical professionals; it would be of interest for future research to assess whether medical professionals are trauma-informed and the extent to which they consider how their words and actions affect their patients. Concerningly, some participant responses are suggestive of medical trauma (International Society for Traumatic Stress Studies, Citation2023), however, the study questions did not enable assessment of medical trauma. As such, future research of medical trauma occurrence during endometriosis medical interactions would be of great importance to better understand the impacts of distressing or difficult medical events. Creation of a medical trauma assessment measure is also needed. It is important to reflect that the survey questions and promotional materials may have encouraged participants with more distressing experiences to take part in the study. Similarly, we must consider that participants may want procedures or medications which differ from medical guideline recommendations and are therefore not offered to them or supported when asked about. Whilst patients may consider this gatekeeping, healthcare providers may simply be providing care they believe to be evidence-based, or being health economy conscious, such as following recommendations of Choosing Wisely Australia and Canada. Regarding participants’ diagnoses of PTSD, it is unclear whether these were related to distress associated with endometriosis medical events or other endometriosis experiences. In-depth clinical interviews would be of interest and allow for a deeper understanding of the traumatic aspects of endometriosis.

Distressing medical events occurred for the vast majority (80.8%) of people with endometriosis. Of the 378 participants who experienced distressing medical encounters, 79.4% reported that they subsequently delayed seeking medical care or experienced significant distress due to the events. With the integration of person-centered and trauma-informed care, medical professionals can reduce experiences of distressing events and negative implications for people with endometriosis and improve symptom management and diagnostic delays. Data Availability Sentence The data are not publicly available due to privacy or ethical restrictions. Supplemental material Appendix 1 Survey Items.docx Download MS Word (20.9 KB)Appendix 1 Survey Items.docxSupplementary File Quotes.docx Download MS Word (26.9 KB)Supplementary File Quotes.docxAcknowledgements The authors wish to acknowledge and thank the participants of the study for generously sharing their time and experiences. The authors would also like to thank the endometriosis organisations and Facebook pages who assisted in advertising this research, including Endo Active, EndoZone, Endometriosis Australia, and the Pelvic Pain Foundation. Thank you to Jacqueline Mills for her contributions to study design. Subhadra Evans: Conceptualization, Formal Analysis, Investigation, Methodology, Supervision, Writing – Review and Editing. Antonina Mikocka-Walus: Conceptualization, Formal Analysis, Investigation, Methodology, Supervision, Writing – Review and Editing. Katherine Stanley: Conceptualization, Methodology, Writing – Review and Editing. Mathew Leonardi: Writing – Review and Editing. Leesa Van Niekerk: Formal Analysis, Investigation, Supervision, Writing – Review and Editing. Disclosure Statement LVN is a member of Endometriosis Australia’s Clinical Advisory Committee and Chair of their Research Panel. She does not receive financial remuneration for these roles. ML reports grants from Australian MRFF, AbbVie, CanSAGE, CIHR, Hamilton Health Sciences, Hyivy, Pfizer; honoraria for lectures/writing from AIUM, GE Healthcare, Bayer, AbbVie, consultancy work with Abbvie, Hologic, Chugai, Gesynta, Roche Diagnostics, Afynia, Pfizer, affiliations with Imagendo, SUGO – Specialized Ultrasound in Gynecology and Obstetrics, outside the submitted work. Correction Statement This article has been corrected with minor changes. These changes do not impact the academic content of the article. Additional information Funding Notes on contributors Danielle Mosterd Danielle Mosterd is a Ph.D. candidate at Deakin University studying diagnostic delay, healthcare experiences and the importance of diagnosis in endometriosis. Leesa Van Niekerk Leesa Van Niekerk is a clinical psychologist and a Senior Lecturer. Dr Van Niekerk conducts research in the areas of persistent pelvic pain (e.g., endometriosis, vulvodynia, vaginismus, painful bladder syndrome), interpersonal relationships, emotional and sexual intimacy, self-compassion, body compassion, body-image, gender and sexual diversity, and perinatal psychology. Antonina Mikocka-Walus Antonina Mikocka-Walus Dr. is a Professor of Health Psychology. Dr Mikocka-Walus is a psychologist with expertise in clinical health psychology, behavioral medicine and psychosomatic medicine. Her particular expertise is in psychogastroenterology and also conducts research about endometriosis, persistent pelvic pain and menopause. Mathew Leonardi Mathew Leonardi is an advanced gynecological surgeon and sonologist (ultrasound specialist). Dr. Leonardi is a nationally and internationally recognized leader in gynaecological surgery and ultrasound. He is an avid researcher, actively contributing academically to the advancement of women’s health. Katherine Stanley Katherine Stanley is the director of the Endo Help Foundation, an organization that educates, empowers and supports people with endometriosis and pelvic pain. Subhadra Evans Subhadra Evans is a researcher in Health Psychology, with specialist training from the National Institutes of Health in conducting research on mind-body interventions. Dr. Evans leads research into yoga, hypnosis and mindfulness for chronic health conditions characterized by pain and stress. She also leads the Qualitative Methods Research Group.

- Australian Commission on Safety and Quality in Health Care. (n.d). Person-centred care. Retrieved January 20, 2025, from https://www.safetyandquality.gov.au/our-work/partnering-consumers/person-centred-care(open in a new window) - Australian Institute of Health and Welfare. (2023). Endometriosis. Australian Institute of Health and Welfare. https://www.aihw.gov.au/reports/chronic-disease/endometriosis-in-australia/contents/summary-1(open in a new window) - Ballard, K., Lowton, K., & Wright, J. (2006). What’s the delay? A qualitative study of women’s experiences of reaching a diagnosis of endometriosis. Fertility and Sterility, 86(5), 1296–1301. https://doi.org/10.1016/j.fertnstert.2006.04.054 - Beloshevski, B., Shimshy-Kramer, M., Yekutiel, M., Levinsohn-Tavor, O., Eisenberg, N., & Smorgick, N. (2024). Delayed diagnosis and treatment of adolescents and young women with suspected endometriosis. Journal of Gynecology Obstetrics and Human Reproduction, 53(3), 102737. https://doi.org/10.1016/j.jogoh.2024.102737 - Bista, S., & Chand, J. (2023). Role of Experiential Learning in the Desensitization of a Medical Student: Our Perspective. JNMA; Journal of the Nepal Medical Association, 61(261), 492–494. https://doi.org/10.31729/jnma.8164 - Braun, V., & Clarke, V. (2022). Conceptual and design thinking for thematic analysis. Qualitative Psychology, 9(1), 3–26. https://doi.org/10.1037/qup0000196 - Brooks, J., McCluskey, S., Turley, E., & King, N. (2015). The utility of template analysis in qualitative psychology research. Qualitative Research in Psychology, 12(2), Article 202–222. https://doi.org/10.1080/14780887.2014.955224 - Cetera, G. E., Facchin, F., Viganò, P., Merli, C. E. M., Frassineti, A., Fiorini, J., Somigliana, E., & Vercellini, P. (2024). “SO FAR AWAY” * How Doctors Can Contribute to Making Endometriosis Hell on Earth. A Call for Humanistic Medicine and Empathetic Practice for Genuine Person-Centered Care. A Narrative Review. International Journal of Women’s Health, 16, 273–287. volume https://doi.org/10.2147/IJWH.S440542 - Cox, H., Henderson, L., Andersen, N., Cagliarini, G., & Ski, C. (2003). Focus group study of endometriosis: Struggle, loss and the medical merry-go-round. International Journal of Nursing Practice, 9(1), 2–9. https://doi.org/10.1046/j.1440-172X.2003.00396.x - De Corte, P., Klinghardt, M., von Stockum, S., & Heinemann, K. (2025). Time to Diagnose Endometriosis: Current Status, Challenges and Regional Characteristics—A Systematic Literature Review. BJOG: An International Journal of Obstetrics and Gynaecology, 132(2), 118–130. https://doi.org/10.1111/1471-0528.17973 - Department of Health and Human Services. (2011). What is person-centred health care? A literature review. State Government of Victoria, Australia. https://www.health.vic.gov.au/publications/what-is-person-centred-health-care-a-literature-review(open in a new window) - Eder, C., & Roomaney, R. (2024). Transgender and non-binary people’s perception of their healthcare in relation to endometriosis. International Journal of Transgender Health, 25(4), 911–925. https://doi.org/10.1080/26895269.2023.2286268 - Ellis, K., Armour, W., & Wood, R. (2025). ‘I never see anyone like myself represented in discussions about endometriosis’: Priorities of LGBTQIA + endometriosis patients in New Zealand. Culture, Health & Sexuality, 27(7), 799–819. https://doi.org/10.1080/13691058.2024.2394650 - Flaum Hall, M., & Hall, S. E. (2017). Managing the Psychological Impact of Medical Trauma: A Guide for Mental Health and Health Care Professionals. Springer Publishing Company. https://eds.s.ebscohost.com/eds/ebookviewer/ebook/ZTAwMHh3d19fMTI4MDU5OF9fQU41?sid=9fd33ca4-40ae-40a5-9a96-d5b8fcab08b0%40redis&vid=13&format=EB&rid=1(open in a new window) - Flaum, M., & Hall, S. (2013). When Treatment Becomes Trauma: Defining, Preventing, and Transforming Medical Trauma. VISTAS Online, 73, 1–15. - Fuss, A., Jagielski, C. H., & Taft, T. (2024). We didn’t start the fire…or did we?—A narrative review of medical gaslighting and introduction to medical invalidation. Translational Gastroenterology and Hepatology, 9(0), 73–73. https://doi.org/10.21037/tgh-24-26 - Husserl, E. (2012). Ideas: General Introduction to Pure Phenomenology. Routledge. https://doi.org/10.4324/9780203120330 - International Society for Traumatic Stress Studies. (2023). Medical Trauma. https://istss.org/public-resources/friday-fast-facts/fast-facts-medical-trauma(open in a new window) - Khan, K., Tariq, N. U S., & Majeed, S. (2024). Psychological Impact of Medical Gaslighting on Women: A Systematic Review. Journal of Professional & Applied Psychology, 5(1), Article 110–125. https://doi.org/10.52053/jpap.v5i1.249 - Krebs, E., & Schoenbauer, K. V. (2020). Hysterics and Heresy: Using dialogism to explore the problematics of endometriosis diagnosis. Health Communication, 35(8), 1013–1022. https://doi.org/10.1080/10410236.2019.1606136 - Kvaskoff, M., Mahamat-Saleh, Y., Farland, L. V., Shigesi, N., Terry, K. L., Harris, H. R., Roman, H., Becker, C. M., As-Sanie, S., Zondervan, K. T., Horne, A. W., & Missmer, S. A. (2021). Endometriosis and cancer: A systematic review and meta-analysis. Human Reproduction Update, 27(2), 393–420. https://doi.org/10.1093/humupd/dmaa045 - Lawani, A. (2021). Critical realism: What you should know and how to apply it. Qualitative Research Journal, 21(3), 320–333. https://doi.org/10.1108/QRJ-08-2020-0101 - Lidung, L. (2025). “You have to be healthy to cope with being sick” A qualitative interview study on the power relation between the Swedish healthcare system and endometriosis patients. https://gupea.ub.gu.se/handle/2077/84633(open in a new window) - Mishra, G. D., Gete, D. G., Baneshi, M. R., Montgomery, G., Taylor, J., Doust, J., & Abbott, J. (2025). Patterns of health service use before and after diagnosis of endometriosis: A data linkage prospective cohort study. Human Reproduction (Oxford, England), 40(4), deaf026–622. https://doi.org/10.1093/humrep/deaf026 - Mosterd, D., Evans, S., Van Niekerk, L., Skvarc, D., Leonardi, M., Stanley, K., & Mikocka-Walus, A. (2025). ‘A name to the pain’: A mixed methods analysis of diagnostic delay and perceptions of diagnosis importance in Australians with endometriosis. Journal of Psychosomatic Research, 193, 112143. https://doi.org/10.1016/j.jpsychores.2025.112143 - O’Hara, R., Rowe, H., & Fisher, J. (2022). Managing endometriosis: A cross-sectional survey of women in Australia. Journal of Psychosomatic Obstetrics & Gynecology, 43(3), 265–272. https://doi.org/10.1080/0167482X.2020.1825374 - Okita, F., Abrao, M., Lara, L. A. S., Andres, M. P., Cunha, C., & Oliviera Brito, L. G. (2021). Endometriosis in transgender men – A systematic review with metanalysis. Journal of Minimally Invasive Gynecology, 28(11), S103–S104. https://doi.org/10.1016/j.jmig.2021.09.140 - Parsa, S., Noroozpoor, R., Dehghanbanadaki, H., Khateri, S., & Moradi, Y. (2025). Endometriosis and risk of cardiovascular disease: A systematic review and meta-analysis. BMC Public Health, 25(1), 245. https://doi.org/10.1186/s12889-025-21486-0 - Price, J. (2024). RECOGNIZING AND IMPROVING TRAUMA INFORMED CARE IN THE FERTILITY CLINIC SETTING. Fertility and Sterility, 122(4), e79–e80. https://doi.org/10.1016/j.fertnstert.2024.07.289 - Ragab Eid, S., Ragab Abou-Shabana, K., Ahmed Hassan, A., & Elzeblawy Hassan, H. (2023). Effect of Pre-Gynecological Examination Counseling Sessions on Relieving Women’s Pain, Discomfort and Enhancing their Satisfaction. Journal of Nursing Science Benha University, 4(1), 751–768. https://doi.org/10.21608/jnsbu.2023.279044 - Requadt, E., Nahlik, A. J., Jacobsen, A., & Ross, W. T. (2024). Patient experiences of endometriosis diagnosis: A mixed methods approach. BJOG: An International Journal of Obstetrics and Gynaecology, 131(7), 941–951. https://doi.org/10.1111/1471-0528.17719 - Roullier, C., Sanguin, S., Parent, C., Lombart, M., Sergent, F., & Foulon, A. (2021). General practitioners and endometriosis: Level of knowledge and the impact of training. Journal of Gynecology Obstetrics and Human Reproduction, 50(10), 102227. https://doi.org/10.1016/j.jogoh.2021.102227 - Sexual Abuse and Mental Health Services Administration. (2014). SAMHSA’s concept of trauma and guidance for a trauma-informed approach. - Spinoni, M., Porpora, M. G., Muzii, L., & Grano, C. (2024). Pain severity and depressive symptoms in endometriosis patients: Mediation of negative body awareness and interoceptive self-regulation. The Journal of Pain, 25(11), 104640. https://doi.org/10.1016/j.jpain.2024.104640 - Swanson, A., & Malhotra, K. (2024). Trauma-informed care in patients with a history of medical trauma. In A. Lawson & A. Swanson (Eds.), Trauma-informed reproductive healthcare (pp. 39–52). Springer Nature Switzerland. https://doi.org/10.1007/978-3-031-67474-7_4 - The Royal Australian College of General Practitioners. (2022). Trauma-informed care in general practice. https://www.racgp.org.au/clinical-resources/clinical-guidelines/key-racgp-guidelines/view-all-racgp-guidelines/abuse-and-violence/trauma-and-violence-informed-care/trauma-informed-care-in-general-practice(open in a new window) - Whitmore, G., Harrington, L., Orlando, M., Pettigrew, J., & Tam, J. (2023). 10400 implementing trauma-informed care in gynecologic surgery. Journal of Minimally Invasive Gynecology, 30(11), S120. https://doi.org/10.1016/j.jmig.2023.08.383 - Willig, C. (2013). EBOOK: Introducing Qualitative Research in Psychology. McGraw-Hill Education (UK).