Imagine living with chronic pelvic pain, painful periods, and pain during intercourse. This is the reality for individuals affected by endometriosis, a chronic gynecological condition where tissue similar to the uterus lining grows outside of the uterus. Endometriosis is more common than we may think, impacting approximately 10- 15% of biologically assigned females worldwide. It not only causes physical symptoms but also has significant negative effects on quality of life, leading to increased anxiety, depression, disrupted social functioning, and strained relationships. Moreover, endometriosis takes a toll on productivity, resulting in substantial work hours lost and higher healthcare costs compared to other common illnesses.
The diagnosis of endometriosis is challenging, often resulting in a prolonged journey for patients seeking answers. Currently, there is no reliable non-invasive method for diagnosing the disease. Factors such as early onset of symptoms, normalization of pain, and overlapping symptoms with other conditions further complicate the diagnostic process. To gain insights into the experiences and demands of individuals with pelvic or menstrual pain, we conducted an online survey. This white paper presents a summary of the survey responses, providing a glimpse into the path to an endometriosis diagnosis.
We conducted the survey in late 2022, early 2023 using Google Forms, distributing the survey link through social media platforms, personal networks, flyers, and QR codes.
We received 147 responses primarily from individuals residing in Canada, with additional responses from the United States, the United Kingdom, Australia, Scotland, Indonesia, England, and Switzerland.
Among the participants, a significant majority (91.2%) reported experiencing pelvic or menstrual pain. They described the pain as debilitating, significantly impacting their quality of life, daily activities, and productivity. Over half of those experiencing pain had been dealing with it for more than 10 years, while others reported durations of 6-10 years, 2-5 years, or less than 2 years.
Regardless of age, the majority of respondents (88.8%) expressed their efforts in seeking a cause for their pain. More than half of them had been searching for answers for over 6 years. Participants turned to various sources, including family doctors, internet searches, obstetrician-gynecologists (OBGYNs), family, and friends. OBGYNs were viewed as the most valuable source of information. Internet searches included terms like endometriosis, abdominal pain, PCOS, and a range of descriptive pain-related terms.
Of the respondents diagnosed with endometriosis, a significant proportion (84.4%) expressed dissatisfaction with the time it took to receive their diagnosis. The diagnostic journey for many stretched from 6 months to over 10 years. A substantial number of patients visited multiple doctors before receiving a diagnosis, with 36.4% seeing more than five doctors.
Demand for a Diagnostic Test:
An overwhelming majority (98.3%) of respondents indicated they would use a point of care diagnostic test if it could help identify the cause of their pain and guide them towards next steps. Additionally, most participants (93.9%) preferred medical tests that could be done at home, avoiding the need to leave their homes. Even individuals already diagnosed with endometriosis showed interest in using at-home tests to monitor their response to treatments.
Our survey results confirm that pain is the primary symptom affecting individuals with endometriosis, significantly impacting their daily lives. Diagnostic delays continue to be a significant barrier to effective healthcare, with many respondents experiencing delays of 6 or more years before receiving a diagnosis. Family physicians and internet searches were common sources of information, but OBGYNs were perceived as the most valuable source.
Although recent studies suggest a potential reduction in the time to diagnosis, further research is needed to confirm these findings and explore benefits for patients presenting with persistent pelvic pain. To address the challenges faced by individuals seeking a diagnosis, health education plays a vital role in helping patients and primary care providers understand potential causes, symptom management resources, and improving access to gynecologists. Additionally, our survey highlights the high demand for a diagnostic blood test, although currently, there are no validated or accepted blood tests for endometriosis diagnosis. Promising advances in combining biomarkers and symptom algorithms offer hope for future breakthroughs in this area.
The survey data underscores the immense impact of pain on the lives of individuals with endometriosis and highlights the frustration caused by diagnostic delays. Obstetricians and gynecologists are valued sources of information, but access to their expertise often requires a referral, posing a barrier to essential healthcare. We advocate for purpose-developed women's health education as a means to provide valuable information to patients and primary care providers, leading to shorter diagnosis times and improved access to safe and effective care.