Survey Finds Early Endometriosis Diagnosis After Initial Symptoms Improves Treatment Approach, Quality of Life
—Health Union launches Endometriosis.net to provide a positive, supportive environment for people living with this life-changing condition—
PHILADELPHIA – October 1, 2018 – Results from Endometriosis In America 2018, a national survey by Health Union, LLC of people impacted by the condition, contribute to the notion that an early diagnosis after initial symptoms are experienced can help to improve quality of life and provide greater awareness of symptoms. The survey of more than 1,200 women with endometriosis symptoms supports the launch of Endometriosis.net, Health Union’s 19th chronic condition-specific online community.
Endometriosis impacts an estimated one in 10 U.S. women, according to the Endometriosis Foundation of America, and is one of the top three causes of female infertility. Unfortunately, scientific studies have indicated a significant gap – many years, in some cases – between the onset of symptoms and official diagnosis, which can lead to delayed treatment and a potentially negative impact on quality of life.
Endometriosis In America 2018 results support this point, with an average gap – for respondents with official diagnoses – of 8.6 years between initial symptoms and diagnosis. Further analyses show that patients with less than two years between symptom onset and diagnosis are less likely than women with a more delayed diagnosis to tolerate symptoms, which some might erroneously attribute to the menstrual cycle, and simply “go on with their lives.”
When comparing differences between symptom onset-to-diagnosis groups, there are some significant findings that suggest a fair amount of progress has been made, for the better. For instance, women with less than five years between symptom onset and diagnosis were significantly less likely to think their symptoms were related to their menstrual cycles than those with a longer symptoms-to-diagnosis gap. Similarly, respondents with less than two years between symptom onset and diagnosis were more likely to seek medical care as soon as possible than those with a larger gap. Women with less than two years before diagnosis were also more likely than respondents in other ranges to have used hormone therapies or other prescription medications to treat endometriosis for less than six months before undergoing surgery.
“Living with endometriosis is much easier now than it was not even a decade ago, as the internet and social media have definitely increased knowledge about the disease,” said Endometriosis.net patient advocate Laura Kiesel. “When I first suspected I had the disease, in the mid-90s, hardly anyone had heard about it, and those aware of it didn’t think it was very serious. All these years later, I get a lot more sympathy and support – both online and in person – and people understand how serious, painful and life-altering it could be.”
Furthermore, respondents diagnosed within two years of initial symptoms were more likely to have seen one or two doctors before being diagnosed, while those with at least a 15-year gap were more likely to see six or more physicians before diagnosis. Additionally, those with more than 15 years between symptom onset and diagnosis were significantly more likely than patients in other ranges to have had their endometriosis found during a surgical procedure for something completely different.
Women with delayed diagnoses of at least 15 years were more likely than those diagnosed within five years of initial symptoms to have the highest perceived severity of symptoms. Those with at least a 15-year gap were also more likely than others to be diagnosed with deep infiltrative endometriosis, which can involve the bowel, bladder, rectum, vagina and other areas. From a quality of life perspective, this subset of women was also significantly less likely to have somebody help in managing their endometriosis.
“More than two-thirds of Endometriosis In America 2018 respondents reported that they began experiencing symptoms before they reached adulthood,” said Tim Armand, Health Union president and co-founder. “In many cases, these women were experiencing a great deal of pain – physical, mental and emotional – sometimes without any recognition that they were experiencing a serious medical condition and had options for treatment. By launching Endometriosis.net, we aim to provide a supportive environment to learn, share experiences and connect with others about living with endometriosis.”
Endometriosis In America 2018 surveyed 1,239 U.S. respondents – all screened to have endometriosis symptoms – from June 13 to July 14, 2018. A summary infographic of the results is available on Endometriosis.net; additional survey results may be available upon request.
About Health Union, LLC
Health Union encourages social interactions that evolve into valuable online health conversations, helping people with chronic conditions find the information, connection and validation they seek. The company creates condition-specific online ecosystems – publishing original, daily content and continuously cultivating social conversation – to support, educate and connect millions of people with challenging, chronic health concerns. Today, the Health Union family of brands includes 19 online health communities, including Endometriosis.net, MultipleSclerosis.net, Blood-Cancer.com and Type2Diabetes.com.