Although it typically impacts a small population of women living with endometriosis, deep infiltrative endometriosis (DIE) can represent a truly complicated patient journey filled with more  symptoms, comorbidities, treatment challenges and negative quality of life. Findings from Endometriosis In America, an annual survey from Health Union, of 1,234 women impacted by endometriosis provides an opportunity to shine a light on how the patient journey differs for people with DIE.

Endometriosis is a chronic condition in which tissue similar to what is typically found in the uterus grows elsewhere in the body. Deep infiltrative endometriosis, sometimes called “extrapelvic endometriosis,” occurs when the organ or tissue is deeply invaded, specifically more than five millimeters below the surface of the peritoneum. 

Although numbers vary, DIE is estimated to impact no more than 5% of women living with endometriosis. However, more than half (52%) of the 1,046 Endometriosis In America respondents who said they’ve received an official endometriosis diagnosis reported having DIE (note that 188 respondents reported having symptoms, but didn’t have an official diagnosis; as a result, they were not asked if they had DIE).

Survey findings suggest that women living with DIE have been dealing with their endometriosis for a long time, with little to no reprieve from their symptoms. Respondents diagnosed with DIE were more likely than diagnosed respondents who don’t have DIE to have experienced initial symptoms before the age of 18 and to have been diagnosed with DIE for more than 10 years. They were more likely to say they experience symptoms every day and that they’ve never experienced a time since diagnosis with few or no symptoms.

Endometriosis.net patient advocate Jessie Madrigal said, “Life with deep infiltrating endometriosis is not easy.” Madrigal lived with symptoms for more than 15 years before officially receiving her initial endometriosis diagnosis. The symptoms included “excruciating painful periods,” joint and deep tissue pain around her hips and tailbone that led to a limp, premenstrual dysphoric disorder, regular bouts of nausea and severe chronic fatigue. Although she continues to live with life-altering symptoms, she said she is now able to manage them daily.

Importantly, women living with DIE are not just dealing with their endometriosis. They were more likely than their non-DIE counterparts to say they are living with a number of comorbidities. These include chronic fatigue syndrome, chronic pain, fibromyalgia, GERD, insomnia, irritable bowel syndrome, neuropathy, polycystic ovary syndrome, thyroid/glandular disease and uterine fibroids.

Survey findings reveal that women living with DIE experience a significant level of treatment frustration, potentially linked to DIE not always responding to medical therapy. Respondents diagnosed with DIE were more likely than diagnosed respondents who don’t have DIE to have tried at least seven different hormone therapies or birth control methods. They were more likely to say they have trouble tolerating hormone therapy, and more than eight in 10 said they wish there were treatments for endometriosis other than hormone therapies (selected top two choices from a seven-point scale).

Respondents living with DIE were also more likely to have had a number of surgeries, including laparoscopy, laparotomy and oophorectomy. Given all of these factors, it’s not surprising that DIE respondents were more likely to say their symptoms aren’t under control, despite feeling like they’ve tried everything possible to manage them.

Madrigal has had multiple surgeries, takes hormones “that have practically eliminated my periods,” follows a strict diet and participates in pelvic-floor therapy. “I know the disease I live with has no cure, but I have learned to listen to my body and take each day as it comes,” she said.

Potentially related to the volume and variety of therapies, including repeat surgeries, needed to treat their deep infiltrative endometriosis, there is a significant difference in the financial impact between those who have and don’t have DIE. Compared to 38% of non-DIE diagnosed respondents, 55% of respondents living with DIE said their endometriosis has had a negative impact on their household finances, savings and living expenses. Similarly, they were more likely to have recently avoided or stopped treatment due to cost. 

Due to the severity of the symptoms experienced with DIE, these women are experiencing a negative impact on their quality of life, especially in terms of intimacy and their work life. Respondents with DIE were more likely to say their condition has negatively impacted their interest in sex or intimacy, as well as their overall romantic relationships. In terms of work life, women living with DIE were more likely to have gone on disability, changed jobs or careers, lost a job, reduced work hours and taken medical leave. 

All of these experiences contribute to a distinct patient journey for women diagnosed with DIE. DIE respondents are more likely than non-DIE respondents to live with symptoms for a longer time, which may lead to a greater strain on personal finances and a lower quality in life. DIE patients are more likely to use other patients, endo-specific websites, online support groups/forums/patient communities, Facebook, Instagram, YouTube, endo patient blogs, and associations to help them better understand DIE. 

For healthcare providers and pharma marketers alike, comparing the unique challenges of those living with deep infiltrative endometriosis – thanks to a significant DIE sample size – to a more typical patient journey with endometriosis can help improve healthcare experiences for these patients, from diagnosis and treatment to financial impact and quality of life.

Engagement on Health Union’s growing portfolio of online health communities combined with large scale patient-reported data from its syndicated In America surveys can offer unique insight and understanding into nuances of the patient journey experienced by different groups of patients. Learn more about Health Union’s custom media, marketing research and clinical services that can help you create smarter, more effective solutions for patients and caregivers.