Maryam Moradi, Melissa Parker, Anne Sneddon, Violeta Lopez, David Ellwood
7 min
This 2014 qualitative study by Maryam Moradi and colleagues dives into how endometriosis—a chronic condition where uterine-like tissue grows outside the uterus—affects women's lives at different life stages. Through focus groups with 35 Australian women aged 17-53, it uncovers the profound, multifaceted toll on relationships, health, work, and finances. With an average 8.1-year diagnostic delay, many participants had endured symptoms for 2-40 years. The research highlights why endometriosis is called 'the missed disease': it's under-diagnosed, with delays of 8 years in the UK and 12 in the US, leading to frustration and normalized suffering. Economically, it rivals diabetes or rheumatoid arthritis, costing ~€9,579 per woman yearly in healthcare and lost productivity. By grouping women into 16-24, 25-34, and 35+ categories, the study reveals age-specific priorities while showing universal pain and disruption.
Researchers used semi-structured focus groups—10 sessions of 3-4 women each—for candid discussions on living with endometriosis. Purposeful sampling from an Endometriosis Centre and community ensured diversity, avoiding bias toward severe cases. A pilot group refined questions and size (optimal 4-5). Eligibility: confirmed diagnosis for ≥1 year, English proficiency, no other chronic illnesses. Transcripts underwent Braun & Clarke's six-phase thematic analysis via NVivo, coding line-by-line until data saturation after 27 months. This yielded two main themes: (1) experiences of living with endometriosis, and (2) its life impacts, clustered into 14 categories.
Endometriosis ravages physical and psychological health (top for all ages): chronic pain, fatigue, sub-fertility, and emotional distress like anxiety/depression from uncertainty and recurrence. Marital/sexual relationships ranked highest overall—pain disrupts intimacy, erodes partnerships, and fuels isolation. Social life suffers as symptoms limit outings and connections. Employment challenges include absenteeism and reduced productivity, while finances strain from treatments and lost income. Quality of life plummets across fertility, sexuality, work, and bonds, with no cure amplifying despair.
Impacts overlap but prioritize differently:
This study humanizes endometriosis beyond biology, showing its ripple effects across lifespans. By amplifying voices, it calls for faster diagnosis, holistic care, and research into age-specific needs. Findings inform services to mitigate pain's dominance, boost QoL, and reduce the 'missed disease' stigma—empowering women from diagnosis to beyond.
BACKGROUND: This study aimed to explore women's experiences of the impact of endometriosis and whether there are differences across three age groups. METHODS: A qualitative descriptive design was conducted using semi-structured focus group discussions with 35 Australian women with endometriosis, in three age groups. All tape-recorded discussions were transcribed verbatim and read line by line to extract meaningful codes and categories using NVivo 9 software through a thematic analysis approach. Categories were then clustered into meaningful themes. RESULTS: Participants' ages ranged from 17 to 53 years and had a history of 2 to 40 years living with endometriosis, with an average delay time to diagnosis of 8.1 years. Two main themes emerged: (1) experiences of living with endometriosis, and (2) impact of endometriosis on women's lives, with 14 discrete categories. The results showed similarities and differences of the impact between the three age groups. The most highlighted impacts were on marital/sexual relationships, social life, and on physical and psychological aspects in all three age groups, but with different orders of priority. Education was the second most highlighted for the 16-24 years, life opportunities and employment for the 25-34 years; and financial impact for those 35 years and above. CONCLUSIONS: Our findings show that endometriosis impacts negatively on different aspects of women's lives. A better understanding of these findings could help to decrease the negative impact of endometriosis by guiding service delivery and future research to meet more effectively the needs of women and teenagers with this condition.
Sam: Pain dominated—sharp, constant, in abdomen, back, legs—worsened by movement, often with nausea or vomiting. Many described pain during sex, which strained relationships. Fatigue, bloating, heavy bleeding, and infertility added layers. Delays averaged eight years from first symptoms around age 17, stretching to nearly 12 years for the oldest group—due to normalizing pain as "normal periods," doctors dismissing it, or misdiagnoses.
Alex: Huh, so delays worsen with age... and those pains hit intimacy hardest in middle groups?
Sam: Exactly. Impacts overlapped on relationships, social life, mental health—but priorities shifted: school for 16-to-24s, jobs and chances for 25-to-34s, finances for 35-plus. Analysis used repeated transcript readings, coding, and theme grouping with NVivo software, plus team and participant checks. The study suggests these patterns hold across clinic and community women.
Alex: So those physical pains and delays create a cascade into relationships and work... but what about treatments—did they bring relief, or just more frustration?
Sam: Treatments varied—pills, surgeries, even diet changes or exercise. Surgeries often eased pain short-term, but symptoms returned for many, stirring fear; a few had hysterectomies in their late 30s. Side effects hit hard—like mood swings from pills—leaving women wary of long-term use.
Alex: That sounds exhausting... and doctors? Were they helpful guides through all this?
Sam: Negative encounters stood out most—doctors dismissing pain as normal or doubting young women. Teens felt disbelieved. Positively, the Endometriosis Centre team listened, but access to specialists lagged due to waitlists.
Alex: Huh... so lack of belief prolongs everything. How did all this reshape their sense of self across ages?
Sam: Physically, pain curbed walking, exercise, or childcare; weight gain and fatigue eroded confidence. Psychologically, it bred anger, depression—women felt less feminine from painful sex or infertility, like burdens unable to plan lives. Diagnosis named the chaos, but no-cure reality sparked worry; younger ones grieved lost youth, older ones unplanned solitude. The study suggests these layers deepen age-specific paths, calling for stage-aware support.
Alex: So those psychological hits vary by age too... like, what specific life areas got derailed most for each group?
Sam: For 16-to-24s, education topped the list—missing school, dropping out, or deferring university. For 25-to-34s, job promotions or full-time work suffered. By 35-plus, finances dominated—high costs for meds or IVF on top of reduced income.
Alex: Huh, so teens miss classes while older women face money stress... and relationships?
Sam: Pain during sex was common, making intercourse hurt, so many avoided it. This strained partnerships—some broke up over infertility or lack of understanding; women in their late 20s to 30s worried about burdening new partners.
Alex: That isolation sounds heavy... did social life shift too?
Sam: All groups pulled back—skipping events or sports due to pain or bleeding worries. Teens voiced broad concerns like fertility anxiety; midlife women regretted delayed diagnosis.
Alex: Right, regrets build over time... so what did the women suggest to ease these burdens?
Sam: They called for better knowledge among general practitioners, more patient information, and wider awareness—like earlier school details. They wanted endometriosis taken as seriously as diabetes, with support groups and less stigma. Dedicated services brought greater satisfaction.
Alex: Huh, so targeted education and specialist care could shift things... but with only 35 women, how solid is this?
Sam: The sample size is small, limiting broader claims, though data saturation captured main patterns. Most came from one clinic, but results matched the community group. It excludes partners and families, with less depth on adolescents.
Alex: Right, those gaps make sense. So pulling it together, what does this add for care?
Sam: It highlights similarities and differences in impacts across ages. This could guide professionals to match life stages, reducing negative effects. Future work should include partners and more on teens.
Alex: That's a grounded takeaway—age-tailored support to counter those hidden shifts. Thanks for joining us on ResearchPod.