Exploring the Nutrition‐Related Healthcare Experiences of Individuals With Endometriosis: Qualitative Interviews With Consumers and Dietitians

ABSTRACT

Introduction

Endometriosis is a chronic and incurable inflammatory disease. Traditionally, symptom management involves medical and surgical intervention; however, dietary modification has grown in popularity. While evidence for the effectiveness of dietary interventions for symptom management is emerging, little is known about the nutrition‐related healthcare experiences of both consumers and dietitians. This study aimed to explore the nutrition‐related healthcare experiences of individuals with endometriosis from both dietitian and consumer perspectives.

Methods

One‐on‐one, semi‐structured interviews with dietitians (n = 9) and individuals with endometriosis aged 18 years or older (n = 15) were conducted online between March and June 2024. Interview protocols were developed using the Theoretical Domains Framework and explored topics including self‐directed diet modifications, access and referrals to dietitians, and confidence in managing endometriosis with diet. The Framework Method was used for data analysis.

Results

Four themes were generated including: [1] Need for individualised care, [2] Demand for healthcare system changes, [3] Importance of trusted voices for both individuals with endometriosis and practitioners and [4] Demand for further disease research. Sub‐themes identified included self‐advocacy, financial burdens, limited accesses to nutrition care, the need for earlier dietary intervention, lacking referral pathways for dietitians in the management of endometriosis, and the need for improved access to clinical support for dietitians providing endometriosis care.

Conclusions

Despite consumer demand there remains a lack of recognition and access to appropriate nutrition support for individuals with endometriosis. Systems changes including clear referral pathways, access to credible nutrition information sources and clinical support are needed to enhance symptom management for individuals with endometriosis.

Summary

• There is a demand for accessible, individualised nutrition care for individuals with endometriosis.

• Due to the limited inclusion of dietary recommendations in endometriosis guidelines, dietitians are turning to peers and alternative providers for information, highlighting the urgent need for dedicated education, training, and clinical resources to support evidence‐based nutrition care in endometriosis management.

• Future research should focus on co‐designing nutrition interventions with individuals with endometriosis and dietitians and establishing clear referral pathways to specialised endometriosis‐care.

1. Introduction

Endometriosis is an incurable, oestrogen‐driven inflammatory disease of unknown aetiology characterised by endometrial‐like tissue outside the uterus [1]. Disease diagnosis is typically made via medical imaging or laparoscopy [2]. However, individuals report an average of 7 years from symptom onset to diagnosis often due to varied nonspecific symptomatology, normalisation of symptoms, and economic and geographic access to care [3]. Endometriosis significantly impacts quality of life and daily functioning due to chronic pain and gastrointestinal disturbances, with the average annual economic cost being Int$9864 per person [4]. The heterogeneity of symptoms presents significant challenges for healthcare practitioners, complicating management [5]. Treatment options include contraceptive and surgical interventions, each varying in efficacy [6] and symptom recurrence [7]. Consequently, individuals often resort to self‐directed dietary modifications to improve symptoms and quality of life.

The role of nutrition for endometriosis has generated interest [8] due to the effects that diet can have on inflammation, steroid hormone activity (i.e. oestrogen), and menstrual cyclicity [9]. Some dietary interventions have demonstrated positive effects on symptoms and quality of life [10, 11, 12, 13]. However, barriers to maintaining dietary changes include time constraints, meal planning burdens, social eating challenges, and variable support from healthcare practitioners [12]. A UK study of 1385 people indicated only 13% of individuals with endometriosis were seeking qualified dietetic input, with dietary information sourced from non‐dietitian practitioners, social media, and general internet searches [14]. Concerningly, individuals with advanced endometriosis are more likely to participate in restrictive dietary practices [15]. Moreover, individuals following self‐imposed or medically prescribed diets have a higher prevalence of disordered eating [16] which may not be appropriately identified without dietetic input. Self‐managed diet modifications may also result in new health issues or exacerbated symptoms, inconsistent results due to inappropriate diet prescriptions, nutritional inadequacy, and reduced quality of life due to increased stress and anxiety associated with food restrictions or the results of diet modifications not meeting expectations [17].

Health professionals believe enhancing referral pathways to multi‐disciplinary care may improve satisfaction with endometriosis care [18]. The effectiveness of dietitian led interventions has been well documented [19, 20, 21, 22]. A UK survey of dietitians working with endometriosis patients demonstrated most specialised in gastroenterology, used the low FODMAP diet, and reported achieving good patient outcomes [14]. Beyond this dietitians reported their competence as low with most indicating they required further training [14]. No additional studies have investigated dietitians' experiences, barriers, enablers, competence, and confidence in endometriosis comprehensively.

This study aimed to qualitatively explore the nutrition‐related healthcare experiences of individuals with endometriosis (hereafter referred to as consumers) and dietitians with endometriosis experience to inform future dietary interventions. These qualitative insights may also be used to inform treatment protocols that address real‐world gaps in nutrition care delivery and patient education, not just clinical or biochemical parameters.

2. Materials and Methods

2.1. Study Overview and Design

A qualitative descriptive approach was used to explore the experiences of consumers and dietitians providing endometriosis care. This method is relevant when exploring novel topics for which there is an absence of pre‐existing frameworks for themes [23]. One‐on‐one semi‐structured interviews were considered the most suitable method for topic exploration as they allow for a more in‐depth understanding of individual experiences and may reveal themes not captured by quantitative methods [24]. The purpose of this study was to explore the nutrition‐related healthcare experiences of consumers and dietitians with endometriosis experience.

The study was approved by Griffith University Human Research Ethics Committee and reported in accordance with the consolidated criteria for reporting qualitative research (COREQ) (see Table S1) [25].

2.2. Sample and Recruitment

Eligible participants were those living in Australia who self‐reported formal diagnosis with endometriosis via laparoscopy or clinically by a gynaecologist via ultrasound (i.e. consumers). Dietitians who reported experience treating individuals with endometriosis were also recruited. Consumers and dietitians aged ≥ 18 years at the time of recruitment with the physical and psychological capacity to participate in the semi‐structured interview process were eligible for inclusion. Eligible participants were able express interest in the study via a flyer QR code that was linked to an online survey. The flyer was displayed in medical centres, posted online through social media (i.e. LinkedIn) and via Dietitian Connection [26] email channels, presented as part of a patient education session to approximately 20 people at a medical centre on the Gold Coast, Australia, and emailed to potential research participants via snowball method, who then shared the flyer image on their social media (e.g. Instagram). Participants who completed an interview were reimbursed for their time with a $20 gift card.

2.3. Data Collection

Qualitative data were collected via one‐on‐one semi‐structured interviews conducted by the primary author, an experienced women's health dietitian and PhD candidate. All interviews were conducted online via Microsoft Teams (version 1415/24071128823) at a date and time negotiated upon by the researcher and the interview participants. Informed consent and demographic information were obtained via an online pre‐interview survey, using the platform REDCap® (version 15.0.18), that detailed the participant information sheet. Consumer data included: age, gender, highest level of education, time since onset of symptoms and disease diagnosis, number of laparoscopies for endometriosis, and American Society for Reproductive Medicine (ARSM) [27] disease stage. Dietitian's data included: age, gender, years of clinical experience, years of experience treating endometriosis, nature of their practice (e.g. online), and size of their practice (e.g. solo practitioner). Consent was also verbally obtained at the commencement of interviews. Interview data were recorded and transcribed verbatim via Microsoft Teams (version 1415/24071128823), with transcriptions compared to the corresponding audio recording to ensure accuracy. All data were securely stored on a cloud‐based portal and deidentified for analysis.

2.4. Protocol Development

Interview protocols were developed by the research team utilising the Theoretical Domains Framework [28] to explore the nutrition‐related healthcare experiences of consumers and dietitians (see Table 1). All interview questions were pilot tested by a volunteer from each participant group before implementation. These responses were included as participant responses in the study. The purpose of pilot testing was to gauge participant understanding and the need for further clarification of any questions, the appropriateness of how questions were ordered, and whether any key areas were missed that may help to explore the topic further. Following pilot testing, additional prompt questions were added to interview protocols for both participant groups to further explore key areas of each topic.

Table 1.

Example interview questions using the theoretical domains framework [24].

Domain	Questions for dietitians	Questions for individuals with endometriosis
Knowledge	Can you comment on the diet recommendations you make to your patients?	Where did you source the information used to guide your nutrition‐related self‐management strategies?
Skills	Where did you source the information used to inform your recommendations and how has it impacted your practice?	What diet‐related self‐management strategies have you used in the past?
Emotion	How do you feel about the nutrition‐related care you've provided to your patients with endometriosis?	How do you feel about the nutrition‐related care you've received for the management of your endometriosis?
Environmental context and resources	What things have enabled you or made it easier for you to provide nutrition recommendations for endometriosis?	What are the barriers you have faced to using nutrition to manage your symptoms?
Memory, attention, decision processes	What things do you think affect your decision to recommend diet modifications to manage endometriosis‐related symptoms?	What things do you think affect your decision to use diet modification to manage your endometriosis‐related symptoms?
Social influences	What do your colleagues and patients say about nutrition as a self‐management strategy for endometriosis?	What do your family, friends, and social network say about nutrition as a self‐management strategy for endometriosis?
Beliefs about capabilities	How confident are you in prescribing diet modifications to better manage the condition?	How confident are you in using diet to better manage your condition?
Behavioural regulation	What are the things, if any, that would make you feel more confident about recommending diet modifications for the management of endometriosis?	What are the things, if any, that you feel would make it easier to manage your condition with nutrition?
Beliefs about consequences	Do you believe there are any negative consequences to self‐managing endometriosis via diet?	Do you believe there are any negative consequences to self‐managing endometriosis via diet/nutrition?
Social/Professional role and identity	In your opinion, what does the ‘optimal’ management of your condition look like and who would be involved?	In your opinion, what does the ‘optimal’ management of your condition look like and who would be involved?
Motivation and goals	Do you feel that there is any other support needed to be provided by dietitians for individuals with endometriosis, if so, what?	Are there things that are more important than nutrition for the management of endometriosis?

2.5. Data Analysis

2.5.1. Qualitative Data Analysis

All interview data were analysed using The Framework Method given it's step‐by‐step process which results in highly structured outputs of summarised data, and therefore, it's suitability for thematic analysis of semi‐structured interview data [29]. An inductive thematic analysis approach was used, where codes and themes emerged from the data. Familiarisation of the data and initial open coding was performed on two transcripts from each participant group (n = 4) by three members of the research team with experience in qualitative data analysis to enhance the accuracy and validity of data analysis. Open coding was performed using Lenovo software NVivo 14.23.3.61. A working analytical framework was developed with the collaboration of all four authors (SD, LV, LJM, LM). Once all the interview data were charted, characteristics of the data and the emergent themes were identified. Participant quotes were reported with corresponding demographic information to provide additional context. Consumers and dietitians were allocated alphabetical denominations and were numbered 1–15 (e.g. C01 and DT01, respectively). Time until diagnostic delay for consumers was abbreviated as ‘[the duration in years] DxDelay’. Years of dietetic experience and years of endometriosis experience for dietitians was abbreviated as the ‘[duration in years] Exp and EndoExp’, respectively.

3. Results

Consumers (n = 15) and dietitians treating individuals with endometriosis (n = 9) completed interviews between March and June 2024. The average duration of interviews was 48 min (range 15–97 min). Participant demographic information is summarised in Table 2. Most participants identified as female (93% consumers and 100% dietitians) and were most commonly aged 25–35 years (40% consumers and 44% dietitians). Diagnostic delays were reported, with two‐thirds of consumers waiting 5 years or more to receive an endometriosis diagnosis. Most consumers (74%) had undergone a single laparoscopic surgery for endometriosis. Clinical experience was common amongst dietitians with 88% reporting > 3 years working as a clinical dietitian. Experience treating endometriosis was uncommon, with 55% of dietitians reporting < 3 years endometriosis‐specific experience.

Table 2.

Participant characteristics: Individuals with endometriosis and dietitians.

	Consumers (n = 15)			Dietitians (n = 9)
Category	n	%		n	%
Age range (years)			Age range (years)
18–24	2	13%	18–24	2	22%
25–30	6	40%	25–30	4	44%
31–35	4	27%	31–35	2	22%
36–40	3	20%	36–40	1	11%
Highest level of education			Nature of practice
≤ Year 12	3	20%	AH clinic	2	22%
Diploma	1	6%	GP clinic	2	22%
Bachelor's Degree	4	27%	Specialist clinic	2	22%
Graduate Diploma	4	27%	Online or TH only	1	11%
Master's Degree	3	20%	Combination of the above	2	22%
Time until diagnosis			Location of practice (ASGS)
< 1 year	1	6%	Major city	7	78%
1– < 3 years	3	20%	Inner regional	1	11%
3– < 5 years	1	6%	Outer regional	1	11%
5– < 10 years	6	40%
> 10 years	4	27%
Number of endometriosis surgeries			Years of clinical experience
0	2	13%	< 3	1	11%
1	11	74%	3– < 5	4	44%
2–3	1	6%	5– < 10	3	33%
4–5	1	6%	10–15	1	11%
ARSM category			Years of endometriosis experience
Unknown	5	33%	< 1	2	22%
Stage I	3	20%	1− < 3	3	33%
Stage II	2	13%	3– < 5	2	22%
Stage III	4	27%
Stage IV	1	6%	5– < 10	2	22%

Abbreviations: AH, allied health; ARSM, American society for reproductive medicine; ASGS, Australian statistical geography standard; TH, telehealth.

3.1. Emergent Themes and Subthemes

Four themes were identified: (1) Need for individualised care, (2) Demand for healthcare system changes, (3) Importance of trusted voices, and (4) Demand for further disease research (see Figure 1 and Table 3).

Figure 1.

Consumer and dietitian nutrition‐related experiences managing endometriosis: Emergent themes and sub‐themes.

Table 3.

Consumer and dietitian nutrition‐related experiences: Emergent themes, sub‐themes, descriptors, and quotes.

Theme	Subthemes	Description	Participant quotes
Need for individualised care	Aligned values and beliefs are essential to the practitioner‐consumer relationship	Establishing good rapport and respecting consumer interests and motivations regarding diet changes is important to both consumers and dietitians to improve patient outcomes.	It's that fine balance and finding someone that gels with you the way you are and your personality traits. (C09, > 10 y DxDelay). Recognition builds and builds as we work with patients… things start to improve in their own sort of ways. So, they can see that diet's important. (DT01, 5–10 y Exp, 3–5 y EndoExp)
	Self‐advocacy of consumers	Participants recognise the lack of transparency regarding investigation and treatment options when it comes to endometriosis and the need to ‘convince physicians of the reality of their symptoms’.	That's all [the doctors] tried to get me on… I struggled on contraceptive when I was a teenager… I really didn't want to go down that path and I just didn't accept that was the only option. (C01, 5–10 y DxDelay). They've just started that path where they're started looking and wanting a diagnosis but, I know that sometimes if feels as though they have to build a case to be taken seriously. (DT04, < 1 y Exp, < 1 y EndoExp)
	Dietary management of symptoms is individualised	Consumers and dietitians understand that symptom using nutrition strategies requires individualisation as individuals respond differently to diet modifications.	Obviously there's trial and error with certain things and you know, everyone reacts differently to different things, but that that's the process. (C09, > 10 y DxDelay) There's not one diet for endometriosis…it's so important to have those one‐on‐one sessions with women so that you can get their full story. (DT03, 10–15 y Exp, 5–10 y EndoExp)
	Demand for support throughout the entire disease journey	Consumers and dietitians recognise that endometriosis is an evolving disease which requires ongoing support to effectively manage it's symptoms.	I definitely would have liked a little bit more ongoing support [from the dietitian]. (C10, 5–10 y DxDelay). Some have seen reprieve, however, because self‐managed it's either quite restrictive or very difficult to maintain… because of that, they're then seeking support, saying I've seen difference, but I don't know where to go from here. (DT01, 5–10 y Exp, 3–5 y EndoExp)
	Barriers to implementing or maintaining dietary changes	Dietitians and consumers recognise the impact of dietary changes on quality of life.	It can be very easy when you're on a restrictive diet to like sort of fixate on that…it could have gone a different way if I didn't have that support (C10, 5–10 y DxDelay). Nutrition and dietetics often gets put down the ladder a little bit of priorities, so if there's one thing for finance to go, we'll probably be the ones to go. (DT04, < 1 y Exp, < 1 y EndoExp)
Demand for healthcare system changes	Diagnostic and treatment delays	It is recognised that consumers experience delays to being diagnosed or achieving adequate symptom management due to the normalisation or dismissal of symptoms, a lack of training regarding endometriosis among healthcare practitioners, and/or the lack of a clear pathway to effective management.	I had told my GP every time my period is so heavy… they would always say that's normal. I think I worked it out to be about 8 years until I said to my GP, can I please get checked for endometriosis? [But] there was a bit of pushback because she was saying ‘oh you don't want to go down the path of getting surgery because there's implications if you get surgery to be diagnosed.’ I just wanted answers. (C01, 5‐10 y DxDelay). Not many GP's know a great deal about managing Endo… I feel like they're not really then referring on adequately to those other [professions] that can be supportive. (DT03, 10‐15 y Exp, 5–10 y EndoExp).
	Access issues are hindering nutrition support	Dietitians and consumers are experience issues accessing healthcare support to better manage endometriosis.	I was looking for a dietitian to help me with it and I couldn't find one [locally] at the time…. Access to health professionals can be really difficult depending what areas you live. (C12, > 10 y DxDelay). We have quite a rural remote group that we're seeing, so access is probably another thing. Both in terms of treatment and food access…a large majority of my clientele are virtual appointments just to be able to give them that access. (DT01, 5–10 y Exp, 3–5 y EndoExp)
	Financial burden limits nutrition access and compliance	There is a disconnect between endometriosis being a chronic disease and acknowledgement of the condition warranting funding through government schemes (i.e. Australian Government Medicare funded Chronic Disease Management plans). Therefore, doctors are disinclined to provide referrals for allied health treatments.	I've had people whose GP refused to put them on a care plan. And said, it's just for chronic conditions. (DT03, 10‐15 y Exp, 5–10 y EndoExp) If I could choose one thing that we could change right this very second… it would be getting endometriosis seen as a chronic illness to the government… I just don't understand how long‐term people are meant to be able to manage this without any funding from the government (C11, 3–5 y DxDelay).
	Lack of professional recognition and referral to dietitians	Dietitians lack recognition as the appropriate professionals to provide nutrition‐related endometriosis care. Consumers to alternative healthcare practitioners like naturopaths and feel at a disservice by the lack of appropriate referral.	There's definitely still room for improvement… I might get in touch with the GP and say hi, this patients' been referred to me for Endo. Can we consider like a GP management plan or something to make it a bit more affordable accessible for them? I have had pushback there of ‘what's dietetics going to do to assist that condition?’ and ‘the specialist should be just kind of handling it’. (DT01, 5–10 y Exp, 3–5 y EndoExp). I would have seen someone differently if I knew that there were dietitians who worked in that space. (C06, 5–10 y DxDelay)
Importance of trusted voices	Consumers and dietitians are seeking information and treatment from professionals specialising in endometriosis	Consumers and dietitians are seeking information and support from healthcare professionals who specialise in endometriosis.	When I'm choosing a dietitian [to go see], I'll be looking at the information on their website about themselves or what they've studied and what their interests are. (C10, 5–10 y DxDelay). Looking for credible sources was an important thing for me because it's a rabbit warren and I can see why women get so confused. (DT03 10–15 y Exp, 5–10 y EndoExp)
	Social supports—consumers trust the advice and recommendation of their peers.	Both consumers and dietitians are trusting their peers for dietary advice for endometriosis.	I'm probably more likely to digest anecdotal evidence… if I have a person that's been through a similar story and they've done something positive, I'm probably more likely to give that a go. (C12, > 10 y DxDelay). My learning has come from other dietitians working in the area… I did [an online dietitian's] 6‐month mentorship a while back, in which you could ask about Endo… (DT03, 10–15 y Exp, 5–10 y EndoExp).
Demand for further disease research	Consumer and practitioner confidence in managing symptoms with nutrition	Consumers and dietitians are wanting to see more thorough dietary research conducted and guidelines established to improve confidence in how to effectively manage endometriosis symptoms.	I'd feel more confident if there was research from a trusted source to say people that followed this diet or ate these things had this symptom reduction that was published by a university or a trial (C12, > 10 y DxDelay) It just comes down to more research needing to be done in terms of that nutrition and endo management. (DT01, 5–10 y Exp, 3–5 y EndoExp)
	Need for earlier dietary intervention	With more diet and endometriosis research, consumers and dietitians hope for earlier recognition of disease and therefore earlier intervention (including diet) to better manage symptoms.	I would have liked a little bit more proactiveness [from my doctor] considering that I was keen. (C15, 5–10 y DxDelay) Maybe if I'd gotten in with diet when I was 15, it might have been a different story (C13, > 10 y DxDelay)

3.2. Need for Individualised Care

3.2.1. Aligned Values and Beliefs Are Essential to the Practitioner‐Consumer Relationship

Establishing good rapport and respecting individual interests and motivations regarding diet changes was important to consumers. If consumers felt their values were not respected (e.g. veganism) or they were recommended dietary modifications that were unrealistic, they were less likely to seek professional guidance or recommend dietitian input to other consumers. Dietitians also identified that aligning their recommendations with consumer values would improve patient outcomes via increased compliance.

3.2.2. Self‐Advocacy of Consumers

Consumers recognise that there is a lack of transparency regarding investigation and treatment options for endometriosis. Consumers are therefore having to do their own research into what diagnostic or treatment options are available and specifically request these from their healthcare practitioner:

I'm just sort of going with and doing more research and trying to get an understanding of where the best thing is to start off with for me and taking steps in that direction.

(C03, 1–3 y DxDelay)

Dietitians also recognise that consumers are having to ‘prove’ to medical professionals that their symptoms are abnormal, requiring further investigation, diagnosis, and treatment.

3.2.3. Dietary Management of Symptoms Is Individualised

Consumers and dietitians recognise that endometriosis symptoms are highly individual and require an individualised approach to nutrition care for optimal patient outcomes. Dietitians also feel that one‐on‐one sessions with consumers are ideal to enhance personalisation of dietary recommendations (see Table 3).

3.2.4. Demand for Support Throughout the Entire Disease Journey

Consumers recognise that endometriosis is an evolving disease which requires ongoing support to effectively manage its symptoms. Similarly, dietitians recognise that consumers often initiate self‐directed diet modifications either pre or post diagnosis to manage symptoms without the desired effect or they are seeking additional advice for symptom or disease prevention.

3.2.5. Barriers to Implementing or Maintaining Dietary Changes

Consumers acknowledge that restrictive dietary behaviours may lead to disordered eating behaviours and further negatively impact quality of life. They also recognise the importance of effective dietetic support to overcome unnecessary dietary restriction and potential negative outcomes that may ensue as a result. Dietitians recognise that financial pressures of seeing multiple health practitioners for the management of symptoms results in consumers having to prioritise treatment over each other and potentially missing out on the holistic approach to the condition.

3.3. Demand for Healthcare System Changes

3.3.1. Diagnostic and Treatment Delays

It is recognised that consumers experience delays to being diagnosed and achieving adequate symptom management. This may be due to the normalisation or dismissal of symptoms or a lack of training regarding endometriosis among healthcare practitioners. Alternatively, delayed treatment may be due to the lack of a clear pathway to effective management:

Anytime that you went to a hospital with endo pain, they didn't know what it was, didn't know how to treat it.

(C11, 3‐5 y DxDelay)

3.3.2. Access Issues Are Hindering Nutrition Support

Consumers may experience issues accessing nutrition support for endometriosis symptom management. This may be due to geographical locations, with those in rural and remote areas less likely to have access to qualified practitioners. It may also be due to the limited number of experienced practitioners, even if the location is not remote or rural, or long wait times and higher costs to see qualified professionals:

There's only a small group of [health professionals] here… It just takes a really long time and that's all through private means, so a lot of costs are involved with that. Through the public system wait times, are most likely, even longer.

(C12, > 10 y DxDelay)

As a result, dietitians are providing virtual consultations to bridge the gap between consumer demand and practitioner accessibility.

We have quite a rural and remote group [so] a large majority of my clientele [are] virtual appointments, just to be able to give them that access.

(DT01, 5–10 y Exp, 3–5 y EndoExp)

3.3.3. Financial Burdens Limit Nutrition Access and Compliance

There is a disconnect between endometriosis being a chronic disease and acknowledgement of the condition warranting subsidised referrals to allied health professionals [30]. Therefore, doctors are disinclined to provide referrals to dietitians. Participants also identified that initiatives to recognise the importance of diet in endometriosis management are required, like that of eating disorders:

They did the big petition to get eating disorders onto the 40 psych visits and the 20 nutrition visits… I feel like something like that needs to happen for women with endometriosis.

(DT03, 10–15 y Exp, 5–10 y EndoExp)

3.3.4. Lack of Professional Recognition and Referral to Dietitians

Dietitians lack recognition as the appropriate professionals to provide individualised dietary advice to consumers, with doctors providing general dietary recommendations, refusing to refer to a dietitian, or referring to alternative healthcare practitioners like naturopaths:

I hadn't gone down the path of naturopaths or dietitians or anything that alternative, but my gynaecologist actually recommended that I see a naturopath to talk about how they could help with supplements and how they could help with diet.

(C12, > 10 y DxDelay)

Consequently, consumers feel there is a level of disservice being provided by not being referred to a dietitian for nutritional intervention for symptom management (see Table 3).

3.4. Importance of Trusted Voices

3.4.1. Consumers and Dietitians Are Seeking Information and Treatment From Professionals Specialising in Endometriosis

Consumers are seeking care from experienced healthcare professionals who specialise in endometriosis. Similarly, dietitians are seeking knowledge and clinical support from credible sources and are able to critique sources of dietary information to best inform their practice.

3.4.2. Social Supports: Consumers and Dietitians Trust the Advice and Recommendation of Their Peers

It is important to consumers that dietary information is from familiar sources, as such, they are seeking advice from their peers. Similarly, due to the emergence of endometriosis and nutrition care for symptom management, dietitians are seeking guidance and clinical support from colleagues. Dietitians are also seeking information from alternative healthcare providers with experience in treating endometriosis:

I've done a naturopath's, who's been working in fertility for 30 years, I did her advanced endometriosis fertility course.

(DT03, 10–15 y Exp, 5–10 y EndoExp)

3.5. Demand for Further Disease Research

3.5.1. Consumer and Practitioner Confidence in Managing Symptoms With Nutrition

Participants recognise the importance of holistic care for endometriosis, however, confidence in the use of diet modifications for symptom management varies. This may be due to their doctor's influence or limited accessibility to credible nutrition research:

The doctors have said, you know, they haven't seen anyone who can manage it just through lifestyle… that long term it won't last.

(C06, 5–10 y DxDelay)

As a result, there is a demand for more thorough dietary research to be conducted and guidelines established to improve confidence in how to effectively manage endometriosis symptoms from both consumers and dietitians.

3.5.2. Need for Earlier Dietary Intervention

Consumers expressed a desire for nutrition intervention, and feel a disservice is being provided with the lack of transparency by health professionals regarding potential management options. With more diet and endometriosis research, consumers hope for earlier recognition of disease and therefore earlier intervention to better manage symptoms.

4. Discussion

4.1. Principal Findings

This study provides new insights into the nutrition‐related healthcare experiences of individuals with endometriosis and dietitians providing endometriosis care. The key finding is that there is a demand for specialised nutrition care among individuals with endometriosis. However, diagnostic delays, financial burdens, and a lack of recognised referral pathways impede access to care. Dietitians and consumers recognised the need for individualised dietary intervention due to the heterogeneity of endometriosis symptomology. They also emphasised the importance of seeking nutrition‐related information from credible or familiar sources, underlining the importance of trust in treatment recommendations. A key insight from consumers was the need for earlier nutrition intervention and ongoing dietetic care throughout the entire disease journey. However, in the absence of clear dietary guidelines, both dietitians and consumers expressed variable confidence in effectively managing symptoms with nutrition. This gap highlights the need for clear, evidence‐based nutrition guidance by accredited dietitians for endometriosis symptom management.

4.2. Interpretation

This study highlighted individual, community, and system barriers to accessing nutrition care for symptom management for individuals with endometriosis. The sub‐themes of ‘trusted or familiar voices’ and ‘lack of professional recognition and referral to dietitians’ were key findings from this study. While individuals with endometriosis have previously expressed the need for more self‐management options to be incorporated into their care [31], results from this study indicate that consumers are having to rely on their peers for dietary recommendations for symptom management. Given the heterogeneity of symptomology and the need for individualised dietary intervention, anecdotal advice may result in negative outcomes such as symptom exacerbation, the emergence of new health conditions (i.e. nutrient deficiencies due to dietary restrictions), unmet expectations of symptom reprieve, disordered eating behaviours [16], or reduced quality of life [32]. In the absence of clear referral pathways to dietetic care consumers feel they are at a disservice, emphasising the need for a collaborative approach to treatment via multidisciplinary input to enhance treatment satisfaction among individuals with endometriosis [33]. To ensure individuals with endometriosis receive evidence‐based nutrition advice and enhanced nutrition care it is recommended that dietitians be routinely included in multidisciplinary care teams. Their expertise may bridge the current gap in dietary management and reduce consumer reliance on unverified dietary information sourced from peers and online.

Dietitians are also seeking nutrition information from peers due to limited reference to diet in broader endometriosis guidelines [34] and the lack of established dietary guidelines for endometriosis management. Dietitians seeking nutrition information from nonaccredited or alternative healthcare providers (i.e. naturopaths) with experience in treating endometriosis highlights the need for further education, training, and resource development to inform endometriosis‐related dietetic practice. As seen in other health conditions [35], enhancing clinical support for dietitians may improve practitioner confidence and competence in managing the disease and increase access to individualised nutrition care for endometriosis patients. It is recommended that health professionals providing endometriosis care foster interdisciplinary collaboration via case conferences and disease‐specific continued education to enhance knowledge and understand the broader context of care. It is also recommended that dietitians have access to practical tools such as nutrition care pathways and evidence‐based handouts, co‐developed with dietitians who have expertise in endometriosis, to enhance the delivery of consistent evidence‐based care.

Consumers and dietitians reported seeking nutrition‐related endometriosis content from the social media profiles of experienced and accredited dietitians. Individuals with endometriosis are known to use social media platforms as informational sources [14, 32, 36, 37, 38] yet content is often a mix of anecdotal patient experiences and scientific or medical evidence [39]. Through processes of misinterpretation or misapplication of evidence, the accuracy of online content is diminished and individuals with endometriosis may be at risk of adverse health outcomes as a result [32]. This study highlighted the importance of access to credible nutrition and endometriosis‐related content for consumers, potentially due to the influence of increased disease awareness resulting in an increased awareness of false or misleading information [40]. It also highlighted the opportunity for accredited dietitians to position themselves as the most appropriate professionals to be debunking online nutrition and endometriosis misinformation. To enhance public access to evidence‐based nutrition advice it is recommended that national health websites, patient advocacy platforms, and hospital networks include up‐to‐date resources developed in collaboration with dietitians and researchers.

Demand for the development of standardised dietary guidelines to improve both consumer and dietitian capacity and confidence in managing the disease is a key finding from this study. While nutrition‐related evidence for the management of endometriosis exists [9, 10, 11], it is largely characterised as low quality with moderate to high risk of bias [11]. Despite this individuals with endometriosis are still utilising diet modification for symptom reprieve, reporting it as the third most effective pain‐relieving self‐management strategy after the use of cannabis and heat [12, 15, 17, 36]. This study highlights the demand for nutrition intervention and therefore the need for more robust dietary interventional studies to inform the development of clinical guidelines to enhance the confidence and competence of consumers and dietitians managing endometriosis. As such, to strengthen the evidence base and ensure nutrition interventions are relevant, acceptable, and sustainable, it is recommended that dietitians and individuals with endometriosis be supported and funded to collaborate on codesign interventions that will contribute to the development of evidence‐based best practice guidelines.

Lastly, this study highlights the lack of cohesive recognition of endometriosis as a chronic disease between medical and government agencies. Existing literature highlights the similarities between endometriosis characteristics and those of other chronic diseases warranting allied health input, and despite improved treatment satisfaction rates among endometriosis when medical and allied health care are combined [33], participants of this study reported inconsistent referral options for multidisciplinary care provided by physicians. This study highlights the need for improved access to dietetic services via financial and logistical support, however this may be difficult to achieve consistently from country to country.

4.3. Strengths and Limitations

This study utilised semi‐structured qualitative interviews which are effective in capturing the complex and subjective experience of participants that are unable to be captured by quantitative methods. Including both consumers and healthcare practitioners provided a comprehensive perspective on the nutrition‐related care for endometriosis. As most consumers were aged 18–30 years, and individuals diagnosed at a young age are known to express more symptoms, greater symptom severity [41], and lower quality of life scores [42], their experiences may differ from older endometriosis patients. Similarly, most dietitians were young (18–30 years), which is below the median age of Australian dietitians [43], with < 10 years total clinical experience (n = 88%), and limited endometriosis experience (n = 77% with < 5 years). However, the limited endometriosis experience is unsurprising given that this is an emerging practice area. Again, dietitian participants' knowledge and perspectives may differ from those with greater endometriosis experience. Lastly, most participants were highly educated and identified as Nonindigenous Australians, limiting the transferability of results to more diverse socioeconomic and ethnic populations.

5. Conclusion

This study highlights the critical need for individualised, ongoing dietary management for endometriosis, facilitated by well‐informed health professionals and supported by robust research. By addressing the systemic barriers and enhancing collaboration between healthcare providers, the quality of care and patient outcomes for individuals with endometriosis could be improved. Future research should focus on establishing clear referral pathways for allied health input and enhancing dietetic practice to ensure accessible nutrition care for all individuals with endometriosis.

Author Contributions

Sharnie Dwyer, Lana J. Mitchell, Lisa Moran, and Lisa Vincze were involved in conceiving and designing the study. Sharnie Dwyer conducted the study, analysed the data, and prepared the paper. Lana J. Mitchell, Lisa Moran, and Lisa Vincze were involved in data analysis and preparation of the paper.

Ethics Statement

This study received ethics approval from Griffith University Human Research Ethics Committee on 28 June 2023 (reference number GU 2023/307).

Conflicts of Interest

The authors declare no conflicts of interest.

1. Peer Review

The peer review history for this article is available at https://www.webofscience.com/api/gateway/wos/peer-review/10.1111/jhn.70097.

Supporting information

Table S1.

Data Availability Statement

The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.