In a systematic review of international qualitative evidence, researchers found that patients often described severe menstrual pain and abnormal bleeding beginning in adolescence, but their symptoms were normalized by both families and primary care physicians as a routine part of menstruation. Many recalled being told their pain was something they had to endure, which led to delays in medical evaluation. For some, this attitude resulted in decades of untreated symptoms before a diagnosis was confirmed.
Initial management in primary care frequently involved oral contraceptives or analgesics. While some patients experienced temporary relief, others felt these treatments masked symptoms rather than addressed the underlying condition. Patients expressed frustration that the reasons for prescribing hormonal therapies were not explained, leaving them uncertain about the purpose of treatment and concerned about the root cause of their pain.
Misdiagnosis was common. Endometriosis was often mistaken for irritable bowel syndrome, anxiety, or depression, which sometimes led patients to accept an alternative diagnosis for years. Several reported being advised to become pregnant or undergo hysterectomy as a means of treatment, despite evidence that these interventions do not reliably resolve symptoms.
Fragmentation of care also contributed to delays. In many health systems, patients were required to obtain a referral from a primary care physician before accessing gynecological services. This process often prolonged the time to diagnosis: the average reported delay between first consultation and specialist referral was 36 months. Some patients described the need to “doctor shop” or repeatedly request referrals before their concerns were acknowledged. Others reported having to educate their primary care physicians about endometriosis, with one noting that her physician became more knowledgeable about the condition only after treating her.
Sarah Harris, PhD, of the Centre for Academic Primary Care, Lifespan and Population Health, School of Medicine, University of Nottingham, and colleagues also noted the psychological impact of repeated dismissal and trivialization of symptoms. Patients described feeling isolated, doubting the legitimacy of their pain, and sometimes avoiding medical care following negative experiences. One patient said, “Receiving a diagnosis was constructed as a relief because the trivialization of symptoms they have experienced, especially from medical professionals such as GPs, had led them to doubt their own bodily experiences and their own sanity.” While most studies reported negative encounters, some (9 of 36) described supportive physicians who facilitated referrals and offered counseling services to help manage anxiety related to the condition.
The systematic review followed PRISMA guidelines and was registered in PROSPERO. Six databases were searched through March 2024, and 4,540 records were identified, of which 37 were included. Studies used semistructured interviews, focus groups, and open-ended surveys, with participants aged 12 to 78 years. Sample sizes ranged from 9 to more than 2,000. Thematic synthesis identified recurring patterns of dismissal, fragmented care, emotional consequences, and calls for improved education and referral systems.
Limitations included a concentration of studies in high-income countries and primarily female participants, with minimal inclusion of gender-diverse patients or those from low-income settings. Some relevant studies may have been excluded if the role of the health care professional was not clearly specified as primary care. Most thematic coding was conducted by one researcher, although findings were reviewed by the wider team.
“This systematic review highlights the persistent challenges faced by individuals with endometriosis when seeking care within primary healthcare settings,” Harris and colleagues wrote. They concluded that systemic barriers contribute to diagnostic delays, including limited clinician awareness, inconsistent diagnostic pathways, and restricted access to gynecologists. Suggested improvements included enhanced training for primary care physicians, standardized referral processes, and reforms to reduce barriers to specialist access.
The authors reported no conflicts of interest.
Source: Women’s Reproductive Health