ABSTRACT
Background
Endometriosis is a chronic condition that affects around 10% of New Zealand women and people presumed female at birth, however, limitations in diagnosis and management mean patients wait a decade on average from symptom onset to diagnosis.
Aims
The purpose of this article is to highlight recurrent themes in the experiences of four independent cohorts of endometriosis patients with surgically confirmed or clinically suspected endometriosis in New Zealand.
Methods and Materials
Four cohorts of patients (n = 111), one with mixed ethnicities, gender and sexual identities (n = 50), one with Māori participants (n = 27), one with Pasifika participants (n = 10) and one with LGBTQIA+ participants (n = 28) were recruited in 2022 and 2023 to participate in online, asynchronous, text‐based discussion groups about their journeys with endometriosis.
Results
Throughout each cohort, there were strong themes of normalisation of pain and dismissal, the value and difficulty of endometriosis diagnosis and the power of the practitioner over the lives of patients.
Discussion
There are key issues in the journeys of endometriosis that occur regardless of ethnicity, gender identity or sexuality. Many of these issues are tied up in societal attitudes that dismiss and downplay menstrual distress. When these attitudes are shared by the medical practitioners caring for endometriosis patients, this has been shown to severely harm patient's journeys to diagnosis, sense of self and capacity to manage the disease.
Keywords: diagnostic difficulty, diagnostic pathways, dismissal, endometriosis, healthcare practitioners, pain normalisation
1. Introduction
The presence of endometrial‐like cells in extra‐uterine locations is known as endometriosis and is a complex disease that may affect up to 14% of women and people presumed female at birth in Aotearoa New Zealand [1]. Endometriosis is associated with significant disruptions to the lives of patients with chronic pain [2], negative impacts on mental health [3], finances [4], fertility [5], and disruptions to work [6, 7, 8], education [9] and relationships [10]. Endometriosis does not have a unique symptom profile [11], can be unidentifiable on imaging, and regularly requires laparoscopic surgery for diagnostic confirmation, although laparoscopies for diagnosis alone without concurrent treatment are now dissuaded in the New Zealand guidelines for endometriosis management [12]. In New Zealand, the average delay from symptom onset to confirmed diagnosis is 8.7–9.7 years [13, 14]. Despite being identified as a disease in the early 20th century [15, 16], and likely described three and half millennia ago [17], the precise cause of endometriosis remains debated [18] and there is no cure.
The purpose of this research was to identify common themes in the experiences of endometriosis patients in Aotearoa New Zealand across four independent cohorts, to highlight the key issues all cohorts faced and their priorities for medical and social changes.
2. Materials and Methods
Four cohorts of endometriosis patients (n = 111) with self‐reported working diagnoses (suspected diagnoses of endometriosis from a medical clinician based on symptom history and/or imaging without surgical confirmation) and self‐reported confirmed surgical diagnoses (Table 1), were recruited between February 2022 and August 2023. All cohorts were recruited primarily via social media, with snowball sharing of study information, including by endometriosis patient organisations, and organisations involved with certain communities, such as the LGBTQIA+ community. All participants were aged 18+ and resided within New Zealand. Participants who expressed interest were sent an information sheet outlining their rights, and returned consent forms. The research was approved by the University of Canterbury Human Research Ethics Committee (Refs: HREC 2022/03, HREC 2022/152, 2023/24).
TABLE 1.
Poll results for all four cohorts, and combined data.
| COHORT | Combined (n = 111) | Mixed a (n = 50) | Māori (n = 27) | Pasifika (n = 10) | LGBTQIA+ (n = 28) | |||||
|---|---|---|---|---|---|---|---|---|---|---|
| Demographics | ||||||||||
| Diagnosis type | ||||||||||
| Working diagnosis with a GP or OBGYN | 20.7% | 16.0% | 14.8% | 20.0% | 32.1% | |||||
| Confirmed surgical diagnosis | 79.3% | 84.0% | 85.2% | 80.0% | 67.9% | |||||
| Stage (only for those with confirmed surgical diagnosis) | n = 91 | n = 42 | n = 24 | n = 8 | n = 19 | |||||
|---|---|---|---|---|---|---|---|---|---|---|
| Stage I | 2.2% | 4.8% | 0.0% | 0.0% | 0.0% | |||||
| Stage II | 16.5% | 19.0% | 25.0% | 0.0% | 5.3% | |||||
| Stage III | 23.1% | 28.6% | 12.5% | 0.0% | 26.3% | |||||
| Stage IV | 30.8% | 16.7% | 33.3% | 75.0% | 42.1% | |||||
| “I do not remember or was never told” | 27.5% | 31.0% | 29.2% | 25.0% | 26.3% | |||||
| Age | 30.9 (8.9) | 27.7 (6.5) | 36.2 (9.5) | 38.1 (9.7) | 29.5 (8.0) | |||||
| 18–24 | 26.1% | 34.0% | 11.1% | 10.0% | 28.6% | |||||
| 25–30 | 29.7% | 40.0% | 18.5% | 10.0% | 28.6% | |||||
| 31–35 | 16.2% | 16.0% | 11.1% | 10.0% | 21.4% | |||||
| 36+ | 27.9% | 10.0% | 59.3% | 70.0% | 21.4% | |||||
| Working status | ||||||||||
| Full‐time | 57.7% | 64.0% | 55.5% | 50.0% | 53.6% | |||||
| Part‐time | 11.7% | 10.0% | 3.7% | 30.0% | 14.3% | |||||
| Student | 16.2% | 16.0% | 18.5% | 10.0% | 14.3% | |||||
| Not working | 0.9% | 0.0% | 3.7% | 0.0% | 0.0% | |||||
| Not working due to health | 10.8% | 8.0% | 11.1% | 10.0% | 17.9% | |||||
| Stay at home parent | 2.7% | 2.0% | 7.4% | 0.0% | 0.0% | |||||
| Parity | ||||||||||
| Nulliparous | 74.8% | 82.0% | 48.1% | 30.0% | 100.0% | |||||
| Parous | 25.2% | 18.0% | 51.9% | 70.0% | 0.0% | |||||
| Onset age | 15.6 (5.4) | 15.3 (4.2) | 16.2 (6.4) | 18.9 (5.0) | 14.3 (4.4) | |||||
| Total delay from symptom onset to diagnosis | 9.9 (6.3) | 7.9 (5.1) | 11.6 (7.8) | 12.4 (6.2) | 10.2 (5.6) | |||||
| Working diagnosis with a GP or OBGYN | 8.0 (5.2) | 4.6 (2.1) | 11.7 (7.6) | 14.5 (4.9) | 9.5 (5.4) | |||||
| Confirmed surgical diagnosis | 10.3 (6.4) | 8.6 (5.3) | 11.9 (8.0) | 12.0 (6.3) | 10.5 (5.8) | |||||
| Symptoms | ||||||||||
| Chronic pelvic pain | 71.2% | 68.0% | 70.4% | 70.0% | 75.0% | |||||
| Period pain (Dysmenorrhea) | 93.7% | 94.0% | 100.0% | 100.0% | 92.9% | |||||
| Pain with sex (Dyspareunia) | 69.4% | 72.0% | 63.0% | 50.0% | 71.4% | |||||
| Pain with urination (Dysuria) | 44.1% | 42.0% | 55.6% | 20.0% | 39.3% | |||||
| Pain with defecation (Dyschezia) | 57.7% | 56.0% | 51.9% | 30.0% | 71.4% | |||||
| Ovarian cysts | 56.8% | 50.0% | 66.7% | 40.0% | 64.3% | |||||
| Mid‐cycle pain | 77.5% | 80.0% | 70.4% | 80.0% | 78.6% | |||||
| Mid‐cycle bleeding (Metrorrhagia) | 41.4% | 28.0% | 59.3% | 60.0% | 46.4% | |||||
| Diarrhoea | 64.0% | 64.0% | 63.0% | 60.0% | 60.7% | |||||
| Constipation | 64.9% | 68.0% | 55.6% | 70.0% | 60.7% | |||||
| Sub‐Fertility | 7.2% | 2.0% | 18.5% | 20.0% | 10.7% | |||||
| Infertility | 19.8% | 12.0% | 33.3% | 40.0% | 7.1% | |||||
| Pain with ovulation | 69.4% | 70.0% | 77.8% | 60.0% | 64.3% | |||||
| Fatigue | 72.1% | 68.0% | 88.9% | 80.0% | 85.7% | |||||
| Nausea | 61.3% | 46.0% | 74.1% | 60.0% | 75.0% | |||||
| Lower back pain | 67.6% | 44.0% | 88.9% | 90.0% | 85.7% | |||||
| Knowledge | ||||||||||
| Level of understanding at symptom onset | ||||||||||
| ‘I was very knowledgeable about endometriosis’ | 0.9% | 2.0% | 0.0% | 0.0% | 0.0% | |||||
| ‘I was well informed about endometriosis’ | 0.9% | 2.0% | 0.0% | 0.0% | 0.0% | |||||
| ‘I knew a bit about endometriosis’ | 10.8% | 10.0% | 7.4% | 10.0% | 14.3% | |||||
| ‘I knew very little about endometriosis’ | 28.8% | 34.0% | 29.6% | 0.0% | 25.0% | |||||
| ‘I had never heard of endometriosis’ | 58.6% | 52.0% | 63.0% | 90.0% | 60.7% | |||||
| Source of learning about what endometriosis was | ||||||||||
| My GP or OBGYN told me about it | 31.5% | 22.0% | 51.9% | 50.0% | 28.6% | |||||
| Education program at school | 8.1% | 14.0% | 7.4% | 0.0% | 0.0% | |||||
| From a family member/whanau | 16.2% | 10.0% | 14.8% | 10.0% | 28.6% | |||||
| From a friend | 12.6% | 14.0% | 11.1% | 0.0% | 14.3% | |||||
| From online research | 21.6% | 30.0% | 7.4% | 10.0% | 17.9% | |||||
| Flyer or advertisement | 1.8% | 2.0% | 0.0% | 10.0% | 0.0% | |||||
| Magazine | 2.7% | 0.0% | 0.0% | 0.0% | 7.1% | |||||
| Novel | 1.8% | 4.0% | 0.0% | 0.0% | 0.0% | |||||
| Diagnosis | ||||||||||
| Tools used | ||||||||||
| Symptom history | 77.5% | 88.0% | 66.7% | 40.0% | 78.6% | |||||
| Physical examination by a GP/OBGYN | 63.1% | 66.0% | 63.0% | 80.0% | 57.1% | |||||
| Abdominal ultrasound | 69.4% | 72.0% | 70.4% | 70.0% | 64.3% | |||||
| Transvaginal ultrasound | 66.7% | 68.0% | 59.3% | 70.0% | 71.4% | |||||
| MRI | 15.3% | 14.0% | 22.2% | 20.0% | 14.3% | |||||
| Laparoscopy | 73.9% | 82.0% | 70.4% | 60.0% | 64.3% | |||||
| Specimen collection (e.g., blood test) | 37.8% | 38.0% | 44.4% | 50.0% | 28.6% | |||||
| Feelings at diagnosis | ||||||||||
| Upset | 26.1% | 22.0% | 25.9% | 20.0% | 32.1% | |||||
| Overwhelmed | 49.5% | 54.0% | 55.6% | 30.0% | 42.9% | |||||
| Relieved | 77.5% | 86.0% | 59.3% | 50.0% | 82.1% | |||||
| Scared | 23.4% | 18.0% | 40.7% | 40.0% | 17.9% | |||||
| Angry | 30.6% | 32.0% | 22.2% | 10.0% | 35.7% | |||||
| Confused | 21.6% | 14.0% | 33.3% | 40.0% | 17.9% | |||||
| Support | ||||||||||
| Relied on for support (I = initially, O = ongoing) | I | O | I | O | I | O | I | O | I | O |
|---|---|---|---|---|---|---|---|---|---|---|
| GP (%) | 62.2 | 46.8 | 62.0 | 40.0 | 70.4 | 55.6 | 70.0 | 60.0 | 53.6 | 53.6 |
| Specialist (e.g., OBGYN (%)) | 23.4 | 56.8 | 28.0 | 64.0 | 11.1 | 63.0 | 20.0 | 20.0 | 25.0 | 50.0 |
| Parents (%) | 58.6 | 48.6 | 66.0 | 62.0 | 44.4 | 37.0 | 30.0 | 30.0 | 64.3 | 42.9 |
| Siblings (%) | 14.4 | 18.0 | 14.0 | 22.0 | 22.2 | 18.5 | 10.0 | 30.0 | 10.7 | 7.1 |
| Partner (%) | 24.3 | 55.9 | 24.0 | 60.0 | 22.2 | 55.6 | 10.0 | 50.0 | 28.6 | 53.6 |
| Friends (%) | 42.3 | 43.2 | 48.0 | 48.0 | 40.7 | 37.0 | 20.0 | 30.0 | 35.7 | 39.3 |
| Other family members/whānau (%) | 15.3 | 13.5 | 10.0 | 12.0 | 18.5 | 18.5 | 40.0 | 30.0 | 14.3 | 7.1 |
| Teacher (%) | 4.5 | 0.0 | 6.0 | 0.0 | 0.0 | 0.0 | 10.0 | 0.0 | 3.6 | 0.0 |
| School Health Staff (e.g., Nurse (%)) | 9.0 | 0.9 | 4.0 | 0.0 | 3.7 | 0.0 | 10.0 | 0.0 | 21.4 | 3.6 |
| Workplace Health Staff (e.g., Nurse (%)) | 0.9 | 1.8 | 0.0 | 0.0 | 3.7 | 3.7 | 0.0 | 0.0 | 0.0 | 3.6 |
| Endometriosis Support Group (%) | 8.1 | 9.9 | 8.0 | 2.0 | 7.4 | 22.2 | 30.0 | 20.0 | 3.6 | 10.7 |
| No one (%) | 4.5 | 1.8 | 0.0 | 0.0 | 7.4 | 0.0 | 0.0 | 0.0 | 7.1 | 7.1 |
| Treatment | ||||||||||
| Treatments used | ||||||||||
| Pain relief medication (e.g., Ibuprofen or Panadol) | 98.2% | 96.0% | 96.3% | 100.0% | 100.0% | |||||
| Neuropathic pain relief (e.g., Amitriptyline, gabapentin) | 45.9% | 44.0% | 55.6% | 50.0% | 35.7% | |||||
| Oral Contraceptive Pill with Oestrogen and Progesterone | 71.2% | 80.0% | 66.7% | 70.0% | 60.7% | |||||
| Progesterone Only Pill (e.g., Cerazette, Primolut) | 51.4% | 50.0% | 44.4% | 70.0% | 57.1% | |||||
| Intrauterine Contraceptive Device (IUCD) (e.g., Mirena) | 58.6% | 64.0% | 59.3% | 60.0% | 50.0% | |||||
| Pelvic Floor Physiotherapy | 22.5% | 12.0% | 29.6% | 50.0% | 21.4% | |||||
| Laparoscopic surgery | 73.9% | 84.0% | 74.1% | 60.0% | 60.7% | |||||
| Counselling | 36.9% | 40.0% | 22.2% | 40.0% | 42.9% | |||||
| Fertility Treatments | 11.7% | 10.0% | 18.5% | 30.0% | 0.0% | |||||
| Hysterectomy | 14.4% | 16.0% | 14.8% | 30.0% | 14.3% | |||||
| Exercise | 57.7% | 66.0% | 44.4% | 60.0% | 53.6% | |||||
| Diet changes | 20.7% | 16.0% | 4.0% | 0.0% | 50.0% | |||||
| Treatments perceived as effective for symptoms | n | % | n | % | n | % | n | % | n | % |
|---|---|---|---|---|---|---|---|---|---|---|
| Pain relief medication (e.g., Ibuprofen or Panadol) | 109 | 39.4 | 48 | 45.8 | 26 | 38.5 | 10 | 30.0 | 28 | 32.1 |
| Neuropathic pain relief (e.g., Amitriptyline, gabapentin) | 51 | 39.2 | 22 | 50.0 | 15 | 46.7 | 5 | 0.0 | 10 | 20.0 |
| Oral contraceptive pill with oestrogen and progesterone | 79 | 21.5 | 40 | 25.0 | 18 | 22.2 | 7 | 42.9 | 17 | 11.8 |
| Progesterone only pill (e.g., Cerazette, Primolut) | 57 | 29.8 | 25 | 24.0 | 12 | 16.7 | 7 | 42.9 | 16 | 43.8 |
| Intrauterine contraceptive device (IUCD) (e.g., Mirena) | 65 | 46.2 | 32 | 50.0 | 16 | 31.3 | 6 | 16.7 | 14 | 64.3 |
| Pelvic floor physiotherapy | 25 | 64.0 | 8 | 100 | 8 | 37.5 | 5 | 40.0 | 6 | 66.7 |
| Laparoscopic surgery | 82 | 72.0 | 42 | 66.7 | 20 | 85.0 | 6 | 66.7 | 17 | 64.7 |
| Counselling | 41 | 29.3 | 20 | 20.0 | 6 | 50.0 | 4 | 25.0 | 12 | 33.3 |
| Fertility treatments | 13 | 15.4 | 5 | 20.0 | 5 | 20.0 | 3 | 0.0 | 0 | — |
| Hysterectomy | 16 | 75.0 | 6 | 100 | 4 | 75.0 | 3 | 66.7 | 4 | 50.0 |
| Exercise | 64 | 45.3 | 33 | 45.5 | 12 | 50.0 | 6 | 50.0 | 15 | 40.0 |
| Diet changes | 23 | 43.5 | 8 | 50.0 | 1 | 100.0 | 0 | — | 14 | 35.7 |
| Availability | ||||||||||
| Belief that endometriosis treatment had been readily available | ||||||||||
| Strongly agree | 8.2% | 12.5% | 11.1% | 10.0% | 0.0% | |||||
| Agree | 14.5% | 16.7% | 7.4% | 0.0% | 21.4% | |||||
| Neutral | 21.8% | 27.1% | 14.8% | 30.0% | 17.9% | |||||
| Disagree | 25.5% | 29.2% | 18.5% | 20.0% | 32.1% | |||||
| Strongly disagree | 29.1% | 14.6% | 48.1% | 40.0% | 28.6% | |||||
| Method of payment for surgical treatments | n = 91 | n = 42 | n = 24 | n = 8 | n = 19 | |||||
| Privately (out of pocket) | 15.4% | 19.0% | 12.5% | 25.0% | 5.3% | |||||
| Publicly funded | 42.9% | 31.0% | 62.5% | 50.0% | 47.4% | |||||
| Medical insurance | 57.1% | 61.9% | 41.7% | 50.0% | 57.9% | |||||
| Method of payment for specialist appointments | n = 87 | n = 39 | n = 20 | n = 10 | n = 22 | |||||
|---|---|---|---|---|---|---|---|---|---|---|
| Privately (out of pocket) | 25.3% | 24.0% | 30.0% | 30.0% | 22.7% | |||||
| Publicly funded | 46.0% | 32.0% | 65.0% | 60.0% | 40.9% | |||||
| Medical insurance | 60.9% | 71.0% | 50.0% | 40.0% | 50.0% | |||||
| Method of payment for non‐surgical treatments | n = 90 | n = 42 | n = 21 | n = 7 | n = 25 | |||||
|---|---|---|---|---|---|---|---|---|---|---|
| Privately (out of pocket) | 58.9% | 54.8% | 61.9% | 28.6% | 56.0% | |||||
| Publicly funded | 47.8% | 38.1% | 52.4% | 85.7% | 48.0% | |||||
| Medical insurance | 32.2% | 38.1% | 19.0% | 14.3% | 32.0% | |||||
| Priorities | ||||||||||
| Ranking of top priorities | ||||||||||
| More social awareness | 9.0% | 10.4% | 6.5% | 7.4% | 8.3% | |||||
| More research funding | 28.3% | 23.7% | 27.5% | 31.5% | 35.1% | |||||
| More social/whanau acceptance | 6.2% | 8.6% | 9.2% | 3.7% | 0.6% | |||||
| More education | 22.2% | 20.4% | 24.8% | 22.2% | 24.4% | |||||
| More subsidised care | 31.6% | 35.8% | 28.1% | 25.9% | 28.6% | |||||
| More support groups | 2.7% | 1.1% | 3.9% | 9.3% | 3.0% | |||||
| Binary selection for future research | ||||||||||
| Improved diagnosis | 50.5% | 50.0% | 59.3% | 70.0% | 39.3% | |||||
| Improved treatment | 49.5% | 50.0% | 40.7% | 30.0% | 60.7% | |||||
Note: Continuous data presented as mean (standard deviation).
The ‘mixed’ cohort had participants with self‐reported endometriosis of any ethnic or cultural background, sexuality or gender identity.
No further selection criteria were applied. Participants contributed to the research by participating in an anonymous, asynchronous online forum (using the Bulletin Board platform from VisionsLive Ltd) where they answered set questions, after which the answers of other participants were revealed, allowing participants to read and respond to what others had shared to engage in discussion. The set questions were a mix of single and multiple‐choice polls and open‐ended questions, creating a data set comprised of both quantitative and qualitative data. The qualitative data from open‐text questions was analysed with a thematic approach [19] in NVivo (Version 1.6.1). The thematic analysis was conducted by preliminary data set familiarisation, utilising a combined transcript of the answers of all 111 participants from the separate cohorts. Semantic codes were developed based upon explicit descriptions of experiences with endometriosis in a first round to develop a preliminary codebook. Two subsequent rounds of coding were conducted to develop, define and refine codes. Codes were iteratively clustered into over‐arching themes. The themes selected for discussion in this article were the prevalent themes in all four independent cohorts.
3. Results and Discussion
The same core questionnaire was used for all four cohorts, with the results of the single and multiple choice poll questions summarised in Table 1 for the combined (n = 111) cohort discussed in this article, the mixed (n = 50) cohort [20, 21], the Māori (n = 27) and Pasifika (n = 10) cohorts [22], and the LGBTQIA+ (n = 27) cohort [23]. The strongest themes identified in all cohorts, regardless of demographic differences, were the normalisation of pain and dismissal (Figure 1), the value and difficulty of endometriosis diagnosis (Figure 2), and the power of the practitioner over the lives of patients (Figure 3).
FIGURE 1.
Summary of the theme of ‘Normalisation of Pain and Dismissal’ with representative quotations. All graphs are n = 111 with results of all four cohorts. (A) Violin plot of the onset age of participants experiencing endometriosis‐related symptoms, average onset of 15.6 ± 5.4 years‐of‐age. (B) Bar graph of symptoms reported by participants, multiple selections possible. (C) Representative graph of the proportions of participant reports of the amount they felt they knew about endometriosis at symptom onset. (D) Bar graph representing the source participants first learnt of the existence of endometriosis from.
FIGURE 2.
Summary of the theme of ‘Value and Difficulty of Endometriosis Diagnosis’ with representative quotations. All graphs are n = 111 with results of all four cohorts unless otherwise specified. (A) Diagnosis tools employed on the participants. Multiple selections allowed. (B) Source used to pay for surgical treatments (n = 91), specialist appointments (n = 87) and non‐surgical treatment (e.g., hormonal treatments, pelvic physiotherapy, n = 90). Multiple selections allowed. (C) Violin plots of delay to diagnosis from symptom onset for all participants (n = 111), participants with working diagnoses from a medical practitioner (n = 23), and participants with confirmed diagnoses (n = 83) (D) Bar graph representing participant reactions to diagnoses. Multiple selections allowed.
FIGURE 3.
Summary of the theme of ‘The Power of the Practitioner Over the Lives of Patients’ with representative quotations. All graphs are n = 111 with results of all four cohorts unless otherwise specified. (A) Individuals participants turned to for support initially at symptom onset, and for ongoing support during management of the disease. Multiple selections allowed.
3.1. Theme One: Normalisation of Pain and Dismissal
Across the four cohorts, 58.6% of the 111 participants had never heard about endometriosis at symptom onset. In the vacuum of knowledge about what endometriosis is, and what menstrual distress feels like relative to non‐pathological menstrual discomfort, participants, medical practitioners, and the general public are left in a position where there is a process of normalisation and dismissal of endometriosis‐related pain, where it is equated with ‘what every menstruating person goes through’ (Figure 1). In this combined cohort, there was an average delay from symptom onset to diagnosis of 9.9 ± 6.3 years, which creates a long period of time in which participants have an unconfirmed source of symptoms. The general absence of knowledge during this time also places the sources patients do learn about endometriosis, such as doctors or the internet, in a position of power to control general understanding of the disease. In the four cohorts, this environment allowed for the amplification of misconceptions and misinformation regarding the disease, such as:
Menstrual distress is ‘normal’.
Endometriosis is rare.
All endometriosis patients have severe symptoms.
Treating endometriosis only matters when trying to conceive.
Pregnancy is a cure for endometriosis.
Hysterectomy is a cure for endometriosis.
Endometriosis is unlikely to recur following surgery.
All treatments fail to work for all patients.
All endometriosis patients will struggle with infertility.
There are symptoms all endometriosis patients have.
If a patient does not have certain symptoms, endometriosis can be ruled out.
Negative ultrasound results mean a patient does not have endometriosis.
Endometriosis can never be identified through imaging modalities.
Young people do not get endometriosis.
Losing weight will resolve endometriosis‐related symptoms.
Endometriosis pain has to be the worst pain you can imagine.
Actions that can result in normalisation and dismissal of symptoms and experiences could stem from interactions with family, friends, partners, other endometriosis patients, and medical practitioners. Statements or behaviours that contributed to a sense of symptom normalisation and dismissal included:
Comparisons of endometriosis patient symptoms to non‐endometriosis‐having menstruators leading patients to feel weak, or dramatic.
Patients comparing their endometriosis symptoms with the endometriosis‐related symptoms of friends or family, leading to pathological menstrual‐related distress becoming normalised.
Downplaying of symptoms by medical practitioners, often by describing that what the patient experiences is ‘normal’ for menstruating people.
Describing people experiencing endometriosis‐related menstrual distress as hysterical, pain fabricators, hypochondriacs or mentally ill.
Suggesting participants should emphasise relaxation, meditation, or psychological therapy in place of seeking medical therapies, specialist physical therapies or surgical support for their symptoms.
3.2. Theme Two: The Value and Difficulty of Endometriosis Diagnosis
In every cohort, the most common reaction to receiving a diagnosis of endometriosis, was relief, with 77.5% overall (n = 111) sharing this reaction, and the majority in each independent cohort. The sentiment of relief can be a reaction to the long diagnostic delays (Figure 2). Patients expressed a clear link between the instalment of doubt with delays in their capacity to access an endometriosis diagnosis.
Key, and evident within the experiences of all cohorts, was the identification of the differences in care between the private and public healthcare systems in New Zealand. It was identified that the differences in care were tantamount to a socioeconomic barrier to efficient support for accessing a diagnosis of and treatment for endometriosis. Of the 91 patients who accessed surgery, only 15.4% did so using the public health system. The majority of patients who were able to access surgical treatment and specialist appointments utilised the private health system by using, in part, or entirely, medical insurance or paying out of pocket. For surgeries, 57.1% used medical insurance and 15.4% paid out of pocket, while for specialist appointments, 60.9% used medical insurance and 25.3% paid privately. Participants associated the private system with:
Greater access to services including imaging.
Greater access to specialists and expertise.
Capacity to select a preferred endometriosis or gynaecological specialist.
Greater access to treatments.
Higher quality information about endometriosis.
More consistent care and expertise.
More understanding, empathetic and sympathetic practitioners.
Reduced wait times.
Insurmountable costs that create a socioeconomic barrier to care.
3.3. Theme Three: The Power of the Practitioner
Both at symptom onset and for ongoing management of the condition, participants in this study expressed high levels of seeking support from general practitioners (GPs) (62.2% of participants sought support from GPs at symptom onset, 46.8% for ongoing management) and specialists (23.4% at onset, 56.8% for ongoing management). This makes the behaviours exhibited by these support structures vital as they will influence the experiences of most endometriosis patients. Medical practitioners exert power over patients at every stage of patient journeys. This includes the processes of normalisation of endometriosis‐related symptoms, dismissal, difficulties navigating an overloaded and underfunded public health system, the inconclusive nature of many diagnostic tools, and the long delays from symptom onset to diagnosis. The nature of this power is that their attitudes, whether intentionally or inadvertently, can significantly impact patient journeys (Figure 3). The attitudes of a participant's medical practitioner, whether that be a GP, nurse, psychologist, physiotherapist, psychiatrist, gynaecologist or another specialist, could substantially influence their perspective of themselves, their symptoms, their desire to continue to attempt to access care, and their capacity to utilise specialist support and treatments.
Medical practitioners who patients considered to have negatively impacted their journey with endometriosis exhibited behaviours including:
The dismissal behaviours outlined in Section 3.1.
Having a poor general understanding of endometriosis, preventing them from identifying the symptoms as pathological.
Underestimating the pain symptoms being expressed by participants.
Not listening to the reports of their patients.
Doctors who ran tests or suggested treatments for psychological conditions in place of physical conditions rather than in parallel or tandem.
Accusations that patients are drug‐seeking and therefore should not receive pain relief medications.
Ignoring lack of consent or revocation of consent during physical examinations, particularly vaginal examinations.
Ignorance of experiential observations from participants about their bodies.
References to, or indicating a belief of, endometriosis patients being ‘hysterical’, ‘professional patients’ or ‘difficult patients’.
Refusing to refer patients for further care, therefore acting as a gatekeeper.
Suggesting that participants should become pregnant to treat their endometriosis, including making this recommendation to minors.
Conversely, there were medical practitioners who were viewed as supportive and their attitudes and behaviours gave participants the perception they mattered and would be supported in accessing further care. These types of medical practitioners often exhibited behaviours such as:
Validating that patients are not hysterical, fabricating symptoms, or exaggerating, creating the sense that they are being taken seriously.
Referring patients for further services, even when this requires multiple rounds of referrals.
Explaining to patients the guidelines or research they are using to inform their management strategy.
Consistently asking for consent and explaining the purpose and benefits of examinations, particularly for vaginal examinations.
Being honest with participants about the limits of their abilities to provide expertise or services.
Holistically assessing the needs and well‐being of the participant, including whole‐body assessments, cultural, social and spiritual health.
Some participants highlighted that if they could afford to, they would switch medical practitioners to find one that would make them feel supported and heard. It was highlighted this could be an emotionally difficult, expensive, and arduous process, particularly as they would have to re‐explain their entire symptom history and journey to date. Furthermore, medical practitioners highlighted by endometriosis patient support groups as supportive could be difficult to access due to being highly sought after.
It cannot be overstated the value to people experiencing endometriosis‐related symptoms of having the validation of a medical professional listening to their story, identifying it might align with endometriosis, highlighting what they have experienced is not ‘normal’, and they are not ‘weak’, and then committing to work with them to access the best diagnostic and management tools possible. Similarly, it cannot be overstated the harmful effects on participants experiencing endometriosis‐related symptoms when they are belittled, dismissed, ignored, invalidated and, in the worst cases, abused when trying to navigate endometriosis care.
4. Discussion
In these cohorts, endometriosis patient journeys from symptom onset, to diagnosis, to effective management were often incredibly difficult. The sources of this difficulty are varied but consistently linked with the normalisation of endometriosis‐related symptoms through dismissal or downplaying. These processes make it harder for patients to first identify within themselves there is something pathological taking place, then communicate their distress to medical practitioners, and continue to advocate for themselves and seek support in the face of dismissal.
New Zealand data indicates that on average a third of endometriosis diagnostic delay is the time taken for patients to express their concerns to a doctor, and the remaining two‐thirds is the delay until endometriosis can be confirmed [13]. In a study of 1334 respondents aged 13–25 in New Zealand, 80.2% indicated they thought pain during periods was normal, and the majority got their information about menstruation from a family member (74.2%) and/or in school classes (63.7%) [24]. It has also been identified by GPs in Australia that an unwillingness to discuss topics consider taboo, such as menstruation, sex, and defecation, can prevent them being able to identify potentially endometriosis‐related symptoms in their patients [25]. These results indicate menstrual health awareness schemes need to include both effective, high‐quality school health programmes and public messaging to create more comfortable spaces for awareness and discussion, in order to reduce delays in individuals seeking the support of their doctor.
The challenging nature of diagnosing endometriosis, and the overloaded nature of the system for accessing surgery in New Zealand creates a socioeconomic barrier to diagnosis as the private system enables those with more resources to access specialist care, diagnostic tools and surgery more readily. Means for the early diagnosis of endometriosis is consistently a high research priority amongst patients and their supporters in New Zealand and Australia [26, 27]. This prioritisation reflects the difficulty of the existing process, and when the 111 participants in these four cohorts were given the binary choice of improved diagnosis or improved treatment, 50.5% selected diagnosis. Improved diagnostic methods ideally would be non‐invasive and low cost, to ensure accessibility to patients regardless of their socioeconomic status, rather than re‐enforcing the existing barriers to confirmation of the diagnosis for some patients.
Finally, throughout this whole process, the power that medical practitioners can exert over the lives of patients has to be considered. In an Australian study with medical practitioners, frustration was expressed by some practitioners at patients who rejected the authority of their medical perspective, and instead advocated for further investigations or different treatments [28]. In the current study, patients whose symptoms or perspectives were dismissed by these types of medical practitioners expressed they struggled to continue to advocate for themselves, as they had to either fight against the advice of their practitioner with their experiential knowledge, or, try and shift to a new practitioner and absorb the resultant costs. Patients who had medical practitioners who could identify endometriosis symptoms, explain clearly the reasoning behind each subsequent approach, consider the health of the patient holistically, and support them through processes of diagnosis and management found they felt safer utilising the medical system for their endometriosis care.
4.1. Study Strengths
There are several key strengths of this study that support the validity of these results. First, a sample size of 111 is large for qualitative research, and data saturation was reached for all themes in all four independent cohorts. This highlights the consistent presence of these experiences within cohorts of endometriosis patients. Secondly, this overall cohort is highly diverse due to the targeted recruitment of Māori, Pasifika, and LGBTQIA+ endometriosis cohorts. These cohorts also had unique challenges, barriers and perspectives.
In the Māori and Pasifika cohorts there was a sense that endometriosis‐related symptoms were shameful and they should maintain silence regarding them; that their endometriosis was only taken seriously through the lens of fertility; and there were increased barriers to care as a result of weight‐based stigma, racism and accusations of drug‐seeking behaviour [22]. Amongst the LGBTQIA+ cohort, the participants highlighted they found their care was predominantly focused on penetrative sex and fertility, even when it was not a personal priority; and experienced barriers due to hetero‐normative assumptions about their personal lives, dismissal of sexual identity, characterisation of endometriosis as a ‘women's disease’, conflicting requirements from gender‐affirming care and endometriosis treatment, and lack of best practice guidelines for the approach to endometriosis for transgender and non‐binary patients [23]. Even with all these unique elements in the experiences of Māori, Pasifika, and LGBTQIA+ endometriosis patients in Aotearoa New Zealand, there remained the repeating key themes highlighted within this article. This indicates that these are patterns that appear to affect people with endometriosis regardless of their cultural, sexual and gender identities.
4.2. Study Limitations
Since this study was primarily recruited through social media and patient organisations, there may be a negative skew influencing the findings of this study. Comparisons in the Netherlands have shown that patients recruited for participation in research through patient organisations have significantly poorer physical quality of life ratings than patients recruited directly from medical clinic settings [29]. If this trend is also the case in New Zealand, endometriosis patients that follow and participate in patient organisations may seek these spaces because of particularly negative experiences with endometriosis. These factors may skew the results of this study towards particularly negative experiences with endometriosis diagnosis and treatment in Aotearoa New Zealand. People with more extreme experiences may feel more inclined to self‐select to participate to share their story, than others who have had a milder or non‐eventful journey, which could skew the overall cohort.
Future research should characterise the relative experiences of cohorts recruited through patient organisations and clinical settings to characterise whether there are significant differences in experiences and quality of life ratings as in the study from the Netherlands. This would allow determination of the extent to which this negative skewing of data may exist within New Zealand studies recruited through this method. It would also be beneficial to determine whether for other chronic health conditions, such as diabetes or polycystic ovary syndrome, there is a consistent trend of experiences being unrepresentatively negative amongst members or followers of patient organisations versus those recruited in a clinical setting. This is particularly important as there are also studies to indicate that patient surveys can over‐estimate patient satisfaction [30], so there is also the potential for patients with particularly negative experiences to choose not to participate through not wanting to relive memories of those experiences.
Another limitation of this study is that the data was coded by the first author only. Independent coding of the data by multiple authors would reduce the risk of bias. All themes developed were presented to the second author with all that connected quotes that informed the creation of the themes to validate the evidence that support the creation of those themes.
4.3. Future Solutions
In order to improve the experiences of people with endometriosis from all backgrounds in navigating diagnosis and management within the Aotearoa New Zealand health system, key changes are required. Potential solutions that can be integrated into the existing health system are updated guidelines and medical practitioner training that incorporates guidance for the equitable and culturally safe care of all patients [22, 23]; increasing awareness of the general public of the symptoms and impacts of endometriosis as well as overall menstrual health literacy; and supporting and investing in the incorporation of advancing diagnostic techniques that allow non‐surgical diagnosis of the condition where possible. Further research into endometriosis should open new avenues for the identification and management of the condition in the future. In New Zealand, investment must be made to support the incorporation of these future methods so that people with endometriosis, regardless of their circumstances, can access the highest possible quality of care.
Conflicts of Interest
Katherine Ellis is the current research project co‐ordinator of Endometriosis New Zealand.
Acknowledgements
The authors would like to thank Deborah Munro, Jordan Tewhaiti‐Smith, and Wayne Armour for their work and support of the original cohort studies. Open access publishing facilitated by University of Canterbury, as part of the Wiley ‐ University of Canterbury agreement via the Council of Australian University Librarians.
Funding: This work was supported by Biomolecular Interaction Centre, University of Canterbury.
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.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
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.