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Acta Obstetricia et Gynecologica Scandinavica logoLink to Acta Obstetricia et Gynecologica Scandinavica
. 2024 May 15;103(8):1625–1633. doi: 10.1111/aogs.14876

The “most bothersome symptom” construct: A qualitative study of Australians living with endometriosis

Alice M Mitchell 1,, Danushi Rajapakse 1, Michelle Peate 1, K Jane Chalmers 2, Steven J Kamper 3,4, Helena Frawley 5,6,7, Claudia Cheng 1,6, Martin Healey 1,6,8, Sarah Lensen 1
PMCID: PMC11266636  PMID: 38751074

Abstract

Introduction

“Improvement in the most bothersome symptom” was recently selected as a core outcome for endometriosis intervention trials. This study aimed to explore the applicability of the construct of “symptom bother” in representing the lived experiences of people with endometriosis.

Material and Methods

Semi‐structured interviews were conducted to understand the meaning of “symptom bother” and related constructs. Eighteen interviews were conducted: 14 among people with a surgical diagnosis of endometriosis who were recruited from the community, and four with people who were recruited from a private gynecology clinic who had either a confirmed diagnosis or a high suspicion of the disease. All interviews were audio recorded, transcribed verbatim, and analyzed thematically.

Results

Three primary themes were identified: (1) endometriosis symptoms and priorities vary with time and context, (2) endometriosis symptoms impair normal daily functioning, (3) endometriosis symptoms are more than just a “bother.” The concept of “bother” to describe endometriosis symptoms did not resonate with most participants. Whilst “bother” was familiar language, it did not encompass the broader implications of living with endometriosis. Participants felt “bother” implied emotional distress, lacking a full understanding of the consequences of the disease. Instead, “symptom impact” was endorsed, allowing participants to quantify and objectively assess their symptoms, free from negative connotations.

Conclusions

This was the first qualitative study to explore “symptom bother” among people living with endometriosis. Instead of “bother,” “impact” was widely endorsed as a suitable construct. This term more appropriately captured the broad ways in which endometriosis symptoms impair daily functioning.

Keywords: bother, endometriosis, impact, qualitative research, symptoms


For people with endometriosis, referring to symptoms as “bothersome” fails to accurately describe the serious and significant consequences of the disease. Instead, the term “impact” better quantifies the symptom experience without the negative connotations associated with “bother.”

graphic file with name AOGS-103-1625-g002.jpg


Abbreviations

COREQ

COnsolidated criteria for REporting Qualitative research checklist

FDA

Food and Drug Administration

RCT

Randomized controlled trial

Key message.

For people with endometriosis, referring to symptoms as “bothersome” fails to accurately describe the serious and significant consequences of the disease. Instead, the term “impact” better quantifies the symptom experience, without the negative connotations associated with “bother.”

1. INTRODUCTION

Endometriosis is characterized by the ectopic growth of endometrial‐like lesions in areas outside of the uterus. 1 Symptoms associated with endometriosis are wide‐ranging and include, but are not limited to, pelvic pain, heavy menstrual bleeding (menorrhagia), painful menstruation (dysmenorrhea), painful intercourse (dyspareunia), and painful urination (dysuria). 2 These symptoms can have significant consequences on various domains of life, 3 including mental health, 4 social 5 and intimate relationships, 6 and functioning at school or work. 7 Due to the variation in disease outcomes, there is no one‐size‐fits‐all management approach, and successful intervention must be tailored according to an individual's presentation and needs. 8

Outcome reporting in randomized controlled trials (RCTs) for endometriosis must be able to systematically capture and characterize symptom variation in participants. However, to date, outcome reporting in RCTs for endometriosis interventions has been inconsistent. A systematic review of 54 RCTs evaluating treatments for the condition reported a total of 164 different outcomes, which were measured using 113 definitions and instruments. 9 This variation in both outcome measurement and reporting limits the ability to compare the results of different trials and determine the effectiveness of interventions.

A recent international consensus study involving patients, researchers, and clinicians recommended a core outcome set for endometriosis research. 10 This core outcome set outlined a minimum set of parameters to be measured and reported in any trial evaluating interventions for endometriosis. 10 Three core outcomes specific to pain and symptoms of endometriosis were identified: overall pain, quality of life, and improvement in the most bothersome symptom. The outcome of “improvement in the most bothersome symptom” was viewed as providing a solution to the variation in endometriosis symptom presentation. This outcome is recommended by the United States Food and Drug Administration (FDA) for the evaluation of drug treatments for vulvovaginal atrophy associated with menopause 11 and migraine, 12 both of which also have variable symptom presentation. The symptom selected by each participant as “most bothersome” at baseline serves as a point of reference for assessing treatment effectiveness at each follow‐up point. This would enable personalized, patient‐centered outcome measurement whilst accounting for the wide variation in endometriosis symptoms.

To the best of our knowledge, no RCTs in the endometriosis population have measured “improvement in most bothersome symptom,” and no studies have investigated the concept of the “most bothersome symptom” in people living with this condition. Before designing a tool to measure this improvement, the construct of symptom “bother” needs to be explored in this population. Such research aims to provide evidence for content validity, which is considered to be the most important psychometric property of any measurement instrument. 13 “Symptom bother” should be specifically defined for this disease context, and the interpretations of “bother” should be supported by empirical evidence from people with endometriosis. 14 Involvement of people with a lived experience of endometriosis is necessary to determine whether the construct is relevant and comprehensible to people living with endometriosis, and to establish appropriate language and terminology for a measurement instrument. 15 , 16

The aim of this study was to explore the construct of “most bothersome symptom” in people with endometriosis to determine (1) what the construct means to them, (2) whether the construct is comprehensible and understandable to them, and (3) whether the construct is relevant to their experiences.

2. MATERIAL AND METHODS

2.1. Study design

One‐on‐one online semi‐structured interviews were used to capture the opinions and experiences of people living with endometriosis through a qualitative descriptive approach. 17 This study is reported in accordance with the Standards for Reporting Qualitative Research 18 and the COnsolidated Criteria for REporting Qualitative Research (COREQ) 32‐item checklist. 19

2.2. Participants and recruitment

Individuals were eligible to participate if they: (1) were aged over 18 years, (2) had either a confirmed surgical diagnosis of endometriosis or high suspicion of endometriosis as determined by their gynecologist, (3) were living in Australia, (4) could read, write, and speak fluently in English, and (5) self‐reported at least one endometriosis‐related symptom via a free‐text field. Of those who had not received a surgical diagnosis at the time of recruitment, confirmation of endometriosis was sought post‐surgery if applicable. A purposive sampling strategy was used, with participants selected for interviews based on differences in age, cultural background, geographical location, number of endometriosis‐related surgeries, and symptomology to provide diverse perspectives. 20

Participants were recruited online via Facebook advertising and through posters in a private gynecology clinic. Participants were directed to an online Qualtrics screening survey where eligibility was assessed, and consent and demographic information were collected. Eligible participants were then contacted by one of the two primary researchers (AM and DR) via email, who invited them to an online interview.

2.3. Procedure

An interview guide was developed by the research team and was refined through pilot testing with three people living with endometriosis to ensure it was comprehensible. All interviews and analyses were conducted by one of the two primary researchers who had received prior qualitative research training and were supervised by an experienced qualitative researcher (MP). Semi‐structured one‐on‐one interviews were conducted online via Zoom and explored the experience of endometriosis symptoms, the selection of a “most bothersome symptom” and the rationale for this, the meaning of “bother” and suitability of referring to endometriosis symptoms as “bothersome,” and which terms participants most preferred to use if selecting a single endometriosis symptom above all others (interview guide available on request). Participants were shown a list of 19 different terms presented in a randomized order (Table S1). They were asked to consider which best represented their experience of living with endometriosis and should be measured by a new measurement instrument. Participants were encouraged to add any additional terms that were missing from the list.

Interviews were audio recorded, lasting between 41 and 112 min, and took place between June and September 2022. Data analysis occurred concurrently with data collection to inform the ongoing recruitment of participants. The concept of “information power” to guide sample size 21 was used, with ongoing conversations between researchers helping to identify the point where no new themes or codes were identified from the data.

2.4. Data analysis

Coding and analysis were guided by the qualitative descriptive approach, a low inference method which aims to describe a subjective phenomenon in the words of the participants. 17 Interviews were transcribed, manually corrected for errors, and deidentified prior to analysis. All empirical data were coded and analyzed using NVivo 12 Plus software. 22

An inductive thematic analysis followed the six phases as detailed by Braun and Clarke. 23 Data were coded simultaneously with data collection to allow for comparison, ensuring inter‐coder consistency and allowing for adjustments to the interview schedule to be made. Regular meetings between the primary researchers facilitated consensus regarding the classification of codes and supporting quotations. Six deidentified transcripts were double‐coded independently by the two primary researchers to enhance the reliability of the results. The primary researchers worked collaboratively to further refine the dataset into themes that were described and supported by quotes.

2.5. Positionality statement

The two primary researchers (AM and DR) were both female research students (PhD and Honors, respectively). AM acknowledges the influence of her professional background as a physiotherapist on her interactions and assumptions with participants. DR is from a non‐clinical background with lived experience of pelvic pain and other gynecological conditions. The other researchers have professional experience in the clinical management of endometriosis (HF, CC, and MH), gynecological health research (KJC, SL, MP, and HF), and persistent pain research (SK and HF), with their contributions to the interview guide allowing it to be relevant to the endometriosis population.

3. RESULTS

3.1. Characteristics of participants

A total of 263 people completed the online Qualtrics survey. Of those, 17 were incomplete, and 23 did not meet inclusion criteria; 5 indicated they were not fluent in English, and 18 had not received a surgical diagnosis of endometriosis. Based on our purposive sampling methods, a total of 18 participants were selected and took part in the research interview; 14 were recruited via social media advertising (P1–P14) and four via the private gynecology clinic (P15–P18) (Figure 1).

FIGURE 1.

FIGURE 1

Participant flowchart.

Participants were diverse in terms of their age, highest level of completed education, and cultural background (Table 1). Half (n = 9) reported having at least two endometriosis‐related surgeries. One participant recruited via the private gynecology clinic had only received an ultrasound diagnosis of endometriosis at the time of interviewing (P18). However, on follow‐up 3 months later, the participant reported a confirmed surgical diagnosis of stage IV endometriosis.

TABLE 1.

Participant demographics (N = 18).

Variable N
Age (years)
Median ± SD (range) 35.6 ± 9.2 (22–52)
Number of endometriosis‐related surgeries
0 1
1 8
2 2
3 6
4 0
≥5 1
State or territory
Victoria 7
Queensland 6
New South Wales 2
South Australia 1
Tasmania 1
Western Australia 1
Highest level of completed education
Secondary school 1
Certificate 3
Diploma 4
Bachelor's degree 7
Post‐graduate degree 3
Cultural background a
Australian 6
Caucasian 4
European 2
Asian 1
Belarusian 1
Chinese 1
Columbian 1
English 1
Filipino 1
Malaysian 1
Māori 1
Scandinavian 1
Turkish 1

Abbreviation: SD, standard deviation.

a

Participants may have self‐reported more than one cultural background therefore total is not equal to N = 18.

3.2. Endometriosis symptoms

Participants reported experiencing endometriosis‐related symptoms from the pre‐specified list of 16 symptoms (Table 2). Fatigue (n = 18), changes in mood (n = 18), and bloating (n = 17) were the most common. Eight symptoms were reported to be the “most bothersome,” with pelvic pain (n = 5), fatigue (n = 3), and period pain (n = 3) most frequently reported. As data relating to the “most bothersome symptom” were collected in an open‐ended method, two participants nominated the symptom of “pain,” which had not been included in the original symptom list.

TABLE 2.

Endometriosis symptom characteristics of participants.

Symptom Experience of symptom, N Selected as most bothersome symptom, N a
Fatigue 18 3
Changes in mood 18 2
Bloating 17 0
Period pain 16 3
Diarrhea 16 0
Pelvic pain 15 5
Pain with bowel motions 15 0
Mid‐cycle pain or pain around the time of ovulation 14 0
Nausea 12 0
Infertility 11 2
Pain with sexual activity 11 0
Constipation 11 0
Heavy menstrual bleeding 10 1
Bleeding between periods 7 1
Pain with urination 6 0
Vomiting 6 1
Pain b 2
a

Two Participants indicated two symptoms and “most bothersome”; therefore, total is not equal to N = 18.

b

“Pain” was not included in the pre‐specified symptom list but was nominated by two participants.

3.3. Study themes

Three main themes were identified relating to how people living with endometriosis perceive and describe their symptom experience: (1) endometriosis symptoms and priorities vary with time and context, (2) endometriosis symptoms impair normal daily functioning, and (3) endometriosis symptoms are more than just a “bother.”

3.3.1. Theme 1: Endometriosis symptoms and priorities vary with time and context

The symptoms of endometriosis vary between and within individuals across time and different life stages. Individual, physiological, environmental, and treatment factors influenced these diverse perspectives amongst the participants. For some, the timing of interventions affected the presence of symptoms:

[Symptoms] go through phases. I've had three surgeries, so [symptoms] kind of go through peaks and waves. (P10)

Many spoke of the persistent nature of endometriosis symptoms: “[Symptoms] never stop, no matter how much medication [you] take, no matter what [you] eat, how well [you] sleep” (P13). The longer symptoms were experienced, the higher the level of mental burden due to the need for continual management strategies:

And now it's been a constant thing I'm thinking about. Before [the symptoms started] it was like breathing, you don't think about breathing, I guess. But now I have to think and kind of have to look at my phone every time. Like, ‘When was the last time I emptied my bowels? What am I going to do? What am I going to eat?’ I started doing green tea and I started doing juices and stuff but, I don't know, me overthinking it isn't helping. (P16)

The influence of endometriosis symptoms also intersected with differing personal priorities and contexts. For some participants, the term “bother” accurately captured this phenomenon. For example, the implications of infertility were particularly bothersome to those trying to conceive, whereas individuals who were not concerned or interested in having children were not as bothered by their clinical infertility:

Personally, [infertility] doesn't bother me because of the decisions that I've made for myself. However, I understand it can be a very big deal to others, so it's each to their own. (P11)

This variation in symptoms and priorities, notably due to the influence of different contexts and life stages, indicates a need for terminology that can capture these complexities.

3.3.2. Theme 2: Endometriosis symptoms impair normal daily functioning

Endometriosis had profound negative impacts on daily living for many participants. Several reported their symptoms as having “flow‐on‐effects” (P3, P18) to other parts of their lives, including work, study, and social events. Functional and social consequences also had impacts on psychological well‐being and were an important way in which participants evaluated their endometriosis symptoms. Many described feeling like their lives were restricted because of their symptoms, particularly relating to psychosocial functioning:

It's not just the pain or the symptoms that affect your life… it is that social aspect of things; they do link together. If it was just the pain that bothered everybody that experiences it, you would still be living your life like anybody else. But it doesn't. It also affects that [social] part of your life. (P8)

I really struggle like when people invite me out to dinner and I can't figure out the menu. Or I know that I'm not going to be able to eat from a specific place because of my endo. And that makes me really insecure. Having endometriosis has kind of in a way given me social anxiety because I have all this extra baggage to carry when I go out and try and socialize. (P15)

For some participants, the symptoms that most limited daily living were considered the “most bothersome.” Participants recounted that they were especially bothered by restrictions to daily tasks and activities, including the ability to walk, sleep, and eat:

Period pain… it bothers me a great deal due to the pelvic pain that it causes all around. Everything is inflamed or on fire. I can't move, I can't do anything. (P11)

The heavy bleeding [is most bothersome] because it really restricts my functioning. I just can't do normal life things when that happens. And the pain too, it interrupts my sleep. (P18)

Although “bother” could convey the repercussions experienced on functioning, the term “impact” emerged as a more suitable word to accurately capture the immense effects felt on all aspects of daily living. Descriptions of participation restrictions were widespread and varying:

With ‘what impacts my life’, I'm thinking more about like activities of daily living—like being able to take care of myself, being able to eat, drink, go to the bathroom, keep my house clean, tidy, look after my pets. (P9)

3.3.3. Theme 3: Endometriosis symptoms are more than just a “bother”

Participants were specifically queried on the applicability of the construct of “bother” in terms of assessing which single endometriosis symptom ranked higher than any others. Some participants described “bother” as being accessible language due to its general and colloquial nature, and it was frequently associated with terms like “troublesome,” “irritating,” and “annoying.” However, the term was considered unfavorably by many for several reasons. “Bother” was widely interpreted as an emotional response or reaction to the physical symptoms of endometriosis:

‘Bother’ to me is more… feelings related. (P3)

‘Bothersome, annoying, upset, distressed, worried, concerned’, they're all emotional words. (P18)

Many considered “bother” to be insufficient to capture their endometriosis experiences because of this strong emotional connotation. Individuals were wary of how “bother” was so strongly suggestive of excessive emotions and “hysteria” and how references to emotionally charged language may reinforce any existing barriers to care.

[My symptoms were] so easily dismissed [by healthcare professionals] because of how [they perceived I was] feeling emotionally. (P13)

Using the term “bother” was also felt to hinder conversations about the larger implications of endometriosis. Some participants even reported being irritated using the term throughout the course of the interview, with one participant stating, “The choice of the word ‘bother’ is bothering me” (P17). The term was generally believed to downplay or minimize the seriousness of living with endometriosis:

Bother’ does, I guess, have the connotation of just like a minor inconvenience, whereas this doesn't feel minor at all. (P3)

[Endometriosis] hurts like hell. So, saying it ‘bothered’ me is probably minimising it quite significantly. (P5)

Similar messages were conveyed about the emotional connotations attached to terms like “troublesome,” with eight participants linking “bother” and “trouble” together as having shared meaning and one participant stating, “It sound like people are whinging… I feel like it minimizes. Children are ‘troublesome’, children are ‘bothersome’… I don't think it conveys a level of seriousness” (P5).

Some participants favored terms like “severe” or “debilitating” when presented with a list of alternative ways to describe their endometriosis symptoms. However, these terms were considered too highly descriptive. They were also often perceived as being “symptom‐specific,” particularly relating to only pain symptoms. In general, participants were cognisant of the variability and heterogeneity of symptom presentations of endometriosis, with one participant stating, “Everybody is different. Everybody's symptoms are different” (P11). Participants were therefore concerned that such terminology did not necessarily apply to everyone living with endometriosis, especially those who experience different symptoms.

‘Impact’ was the most favored term because it was a comprehensive descriptor that encapsulated all the varied, undesirable consequences or effects of the symptoms of endometriosis. Importantly, “impact” was perceived to convey the gravity of endometriosis without negative emotional or dismissive connotations and is universally understandable:

I think I prefer the choice of the word ‘impact’. It does just seem more objective. And I guess it doesn't feel like there's any like connotation or insinuation that the symptoms of endo might just be like a little bit annoying. (P3)

I think ‘impact’ is a word that everyone would understand. (P18)

Participants could also more objectively quantify the meaning of “impact” (eg canceled plans or cost of treatment), and they were able to use those tangible changes to inform their assessment of their own endometriosis symptoms. “Impact” was therefore believed to capture the consequences of the disease beyond the symptom, drawing attention to the weight and seriousness of personal experience:

‘Impact’, it seems more objective, like what's taken the most time or what's taken the most finances… it just seems more quantitative, I guess. (P3)

4. DISCUSSION

This qualitative study explores how people living with endometriosis understand and perceive the construct of “bother” in relation to their symptoms to support the development of a new measurement instrument required as part of the core outcome set for future endometriosis research. 10 Three themes were identified from this study, the first two of which (1) endometriosis symptoms and priorities vary with time and context and (2) endometriosis symptoms impair normal daily functioning, were not novel insights on their own but may be viewed as foundational to the third theme of (3) endometriosis symptoms are more than just a “bother,” which was a key finding of this study.

The symptom experiences expressed by the study participants were diverse and suggest that the experience of endometriosis symptoms is influenced by contextual factors that have the potential to infiltrate all aspects of daily functioning. This understanding demonstrates the need for endometriosis symptoms to be assessed holistically, with language that can capture these nuances. Ultimately, the term “bother” did not address this complexity. When asked to consider the most appropriate phrasing to describe one endometriosis symptom above all others, there was a strong preference amongst participants for “impact.”

It was clear from the study participants that endometriosis symptoms were highly variable. Each participant had a distinct, personal relationship with the disease, often complicated by the chronicity of the condition. Physical indicators of disease therefore did not capture the entire endometriosis experience. Instead, symptoms were only one part of a larger web of wide‐ranging patient narratives involving other personal emotional and social struggles. For example, the growing mental burden of disease management was a critical psychosocial factor for some participants, but not others. This heterogeneity, including the variation in clinical presentation and lived experience, is in line with the current paradigms in endometriosis research and supports the rationale for a tool that permits selection of symptoms based on individual experience.

One of the most notable findings was that participants did not endorse “bother” as a relevant or appropriate construct for endometriosis symptom assessment. The term “bother” and other common constructs such as “distress,” which are used in other gynecological outcome instruments, 24 , 25 held unfavorable connotations and social stigma. Participants were reluctant to use such “emotional” language, as many reported to have struggled for legitimacy and had been typified as “hysterical” by healthcare professionals. This finding is particularly poignant within a broader socio‐cultural framework that acknowledges the ways in which female patients have been historically characterized and mistreated. 26 , 27 There are reports that endometriosis patients can be disbelieved or dismissed by their healthcare professionals, which may in part account for the long diagnostic delays that are experienced. 28 These experiences may be compounded amongst people who also face language and communication barriers when seeking support and treatment.

The fact that participants did not resonate with the term “bother” is significant, given that this outcome was specifically selected as part of the core outcome set for future endometriosis clinical trials. 10 The decision to include the “most bothersome” or “most troublesome” symptom in the endometriosis core outcome set was influenced by the routine measure of this construct in trials for menopause‐related vulvovaginal atrophy. It was for this reason we chose to use the original wording of “bothersome” in this study. In both menopause research and also acute migraine, the FDA has recommended assessing the “most bothersome symptom” as a primary endpoint in clinical trials. 11 , 12 However, our findings emphasize that the construct of “symptom bother” is not suitable in the context of endometriosis. Indeed, to the best of our knowledge, there is no empirical evidence that people living with menopause or migraine relate to or endorse the construct of symptom bother either, as it is unclear whether the development of these measures followed robust processes or involved people with lived experience. It is possible that the “most bothersome symptom” construct is also not relevant for people living with these conditions.

The term “impact” was preferred to describe endometriosis symptoms due to its appropriateness, understandability, and applicability in describing the symptom experiences of people living with the disease. A new measure should ask participants to nominate the symptom that “impacts them the most.” Our findings are supported by the use of the construct of “impact” in other outcome measurement instruments for endometriosis symptoms, including the Endometriosis Impact Scale, 29 the Endometriosis Impact Questionnaire, 30 and the Pelvic Pain Impact Questionnaire. 3 Although these questionnaires focus on “symptom impact,” they do not meet the needs identified in the core outcome set of capturing the single “most impactful symptom.” These existing instruments extend more broadly to other functional consequences of the disease, rather than measuring and nominating a single symptom. Our study provides evidence that “symptom impact” is an important construct for people with endometriosis and that when prompted to nominate a single symptom above all others, as is required for completion of the instrument as part of the endometriosis core outcome set, the construct of “symptom impact” is most appropriate.

This study had clear strengths. The one‐on‐one semi‐structured interview study design gave participants the opportunity to discuss their perceptions and experiences without being influenced or interrupted by other participants, which may occur in focus groups, and provided them with the opportunity to expand upon their responses to the open‐ended questions. The anecdotal and qualitative insights gave a rich understanding of the meaning of “bother” and “impact” within the Australian endometriosis population, which would not have been possible using quantitative methodologies. The study's recruitment strategy involved participants from both community and clinical settings, which resulted in a diverse group of participants in terms of symptomatology, treatment and disease management, interactions with healthcare providers, and experience of living with endometriosis. The study had several limitations. Study recruitment and interviews were conducted online, which may have posed a barrier for some, such as those from low socioeconomic backgrounds and older people. Only people who were fluent in English could participate. All participants were living in Australia and therefore the applicability of “symptom impact” in other cultural settings, and other languages, remains to be established. Further quantitative work could be undertaken to confirm our findings of a preference for the construct of “symptom impact.”

5. CONCLUSION

In people living with endometriosis, the construct of “symptom bother” was considered to downplay the severity of symptoms and had negative connotations of being unnecessarily emotional. Instead, “symptom impact” was considered more appropriate as it better captured the consequences of living with endometriosis symptoms and was free from negative associations. Further work is needed to develop and validate an outcome measurement instrument to comprehensively assess the “most impactful symptom” in people living with endometriosis.

AUTHOR CONTRIBUTIONS

All authors contributed to the study conception and design. Data collection and analysis were performed by Alice M Mitchell and Danushi Rajapakse, and was supervised by Sarah Lensen. The first draft of the manuscript was written by Alice M Mitchell and Danushi Rajapakse. All authors commented on previous versions and read and approved the final manuscript.

FUNDING INFORMATION

This study was supported by an Innovation Grant from the Norman Beischer Medical Research Foundation.

CONFLICT OF INTEREST STATEMENT

All authors report no conflicts of interest.

ETHICS STATEMENT

Approval for this study was granted by the University of Melbourne Human Research Ethics Committee on May 24, 2022 (Reference Number 2022‐23687‐28785‐5).

Supporting information

Table S1.

AOGS-103-1625-s001.docx (22.8KB, docx)

ACKNOWLEDGMENTS

The authors would like to thank the study participants who shared their important insights into living with endometriosis symptoms. The authors would also like to thank Lucy Althorpe, Courtney Burges, and Sam Cook for pilot testing the interview schedule. Open access publishing facilitated by The University of Melbourne, as part of the Wiley ‐ The University of Melbourne agreement via the Council of Australian University Librarians.

Mitchell AM, Rajapakse D, Peate M, et al. The “most bothersome symptom” construct: A qualitative study of Australians living with endometriosis. Acta Obstet Gynecol Scand. 2024;103:1625‐1633. doi: 10.1111/aogs.14876

Alice M. Mitchell and Danushi Rajapakse share their first authorship.

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Supplementary Materials

Table S1.

AOGS-103-1625-s001.docx (22.8KB, docx)

Articles from Acta Obstetricia et Gynecologica Scandinavica are provided here courtesy of Nordic Federation of Societies of Obstetrics and Gynecology (NFOG) and John Wiley & Sons Ltd

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