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HealthyWomen Nationwide Endometriosis Survey Identifies Gaps in Understanding among Women and Healthcare Professionals

03/06/2017

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  • Less than a third of women respondents correctly recognize all the painful symptoms of endometriosis
  • Two-thirds of women respondents know someone who has endometriosis, but the majority say they rarely speak to friends or family about pelvic pain
  • The survey reinforces need for more education and communication about endometriosis among women and healthcare professionals to bring awareness to diagnosis and understanding

Red Bank, N.J., - HealthyWomen, the nation's leading independent health source for women, today announced the results of a nationwide survey* with women and healthcare professionals surrounding endometriosis, a disease that occurs when tissue similar to that normally found in the uterus begins to grow outside of the uterus, leading to long-term pelvic pain (during or between periods), pain with intercourse and other painful symptoms.1 The survey, sponsored by AbbVie and titled "What Do You Know About Endometriosis?", was conducted in the U.S. among 1,211 women over the age of 18 and 352 healthcare professionals.2 The results indicate that education is needed to help women identify all the painful symptoms of endometriosis and address them with a healthcare professional. Professionals need to be more aware of evaluating and treating endometriosis, understand its impact on their patients' daily lives and support proper communication of symptoms with their patients.

"The survey findings indicate a lack of knowledge and conversation about endometriosis symptoms among women," said Beth Battaglino, RN, and CEO of HealthyWomen. "Without informed communication of endometriosis symptoms, it can take longer for women to receive a diagnosis. Both patients and healthcare professionals would benefit from further education to increase awareness of symptoms so women can take action when they present."

Key Survey Findings2

  • Among almost 700 respondents, only 29% were able to correctly identify all the painful symptoms associated with the disease, including painful urination or painful bowel movements.
  • Nearly half (42%) of more than 850 women respondents were unaware that pain during sex may be associated with endometriosis and 20% of HCPs surveyed rarely or never ask female patients if they have pain during sex, even though it is a common symptom of endometriosis.
  • Among 862 women respondents, two-thirds (67%) know someone who has endometriosis, but the majority (60%) said they rarely, if ever, speak to friends, family or those closest to them about pelvic pain.
  • Among 219 women respondents who identified themselves as diagnosed with endometriosis, 42% were told by their HCPs that their pain was simply "part of being a woman," while 47% had their symptoms described by HCPs as "normal."
  • Among approximately 260 women respondents who identified themselves as diagnosed with endometriosis, 72% had to see two or more HCPs and 24% saw four or more before receiving a diagnosis. Nearly a quarter (23%) of respondents with endometriosis waited four or more years to receive a diagnosis.
  • Only 34% of HCPs surveyed said they ask if pelvic pain interferes with daily activities at every visit. However, among approximately 260 women respondents who identified themselves as being diagnosed with endometriosis, 86% said the condition interferes with their day-to-day activities at least some of the time.

Using the survey findings, HealthyWomen created a series of data-driven, educational content on endometriosis intended to provide information and tools that women can use in conversations with their healthcare providers. The materials were released in March as part of Endometriosis Awareness Month and can be found on HealthyWomen.org.

The survey and educational content are part of a disease state awareness campaign called Get in the Know about ME in EndoMEtriosis (meinendo.com), an effort focused on galvanizing women to learn about and understand endometriosis, which affects an estimated one in 10 women.3 The campaign seeks to educate and empower women to evaluate whether they are the "ME in endoMEtriosis" by finding out how to identify and address symptoms of endometriosis and helping others on their journey to do the same.

For more information, visit MEinEndo.com and join the conversation online by sharing #MEinEndo.

*This survey titled "What Do You Know about Endometriosis?" was conducted within the United States by HealthyWomen in partnership with AbbVie. It was conducted online from December 7, 2016, to February 6, 2017, among 1,211 women ages 18 and older and 352 HCPs. The number of non-HCP respondents to any given question was no less than 219 women ages 18 and older and totaled as many as 1,123 women ages 18 and older.

About HealthyWomen
For more than 25 years, HealthyWomen has inspired and empowered millions of women to take a proactive role in their health. A progressive and unique women's health not-for-profit, HealthyWomen combines a 24/7 online health media platform with award-winning education and advocacy campaigns. HealthyWomen's web destination engages with readers and health care providers alike and provides valuable health information that educates women and guides them through the various ages and stages of life. For more information on HealthyWomen, visit http://www.healthywomen.org.

About Endometriosis
Endometriosis occurs when tissue similar to that normally found in the uterus begins to grow outside of the uterus, leading to long-term pelvic pain (during or between periods), pain with intercourse and other painful symptoms.1 These growths are called lesions and can occur on the ovaries, the fallopian tubes or other areas near the uterus, such as the bowel or bladder.4,5 There is no cure for endometriosis, and the associated pain is currently managed with oral contraceptives, progestins, danazol, nonsteroidal anti-inflammatory drugs, opioids and GnRH agonists, many of which are not specifically indicated for the treatment of endometriosis. In more extensive cases, surgical interventions, like laparotomy or laparoscopy, are often pursued, and they may not be curative for all individuals.6

About Get in the Know about Me in EndoMEtriosis
Get in the Know about Me in EndoMEtriosis is a women's health campaign dedicated to empowering women to learn about and understand endometriosis. Endometriosis affects an estimated one in 10 women,3 but despite being one of the most common gynecologic disorders in America, there is a lack of awareness and prioritization of endometriosis as an important women's health issue.7 Learn more at MEinEndo.com and join the conversation online by sharing #MEinEndo.

About AbbVie
AbbVie is a global, research-based biopharmaceutical company formed in 2013 following separation from Abbott Laboratories. The company's mission is to use its expertise, dedicated people and unique approach to innovation to develop and market advanced therapies that address some of the world's most complex and serious diseases. Together with its wholly-owned subsidiary, Pharmacyclics, AbbVie employs more than 28,000 people worldwide and markets medicines in more than 170 countries. For further information on the company and its people, portfolio and commitments, please visit www.abbvie.com. Follow @abbvie on Twitter or view careers on our Facebook or LinkedIn page.

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1 Johnson NP, Hummelshoj L. for the World Endometriosis Society Montpellier Consortium. Consensus on current management of endometriosis. Human Reprod. 2013;28:1552-1568.

2 What Do You Know About Endometriosis? Healthy Women website. http://www.healthywomen.org/content/article/what-do-you-know-about-endometriosis-0. Updated March 6, 2017. Accessed March 6, 2017.

3 The American College of Obstetricians and Gynecologists. ACOG FAQ013: Frequently Asked Questions Gynecological Problems. October 2012.

4 Giudice LC. Clinical practice: Endometriosis. New England Journal of Medicine. 2010;362:2389–2398.

5 The American College of Obstetricians and Gynecologists. ACOG Education Pamphlet AP013: Endometriosis. Washington, DC: September 2008. ISSN 1074-8601.

6 Mayo Clinic. Diseases & Conditions: Endometriosis Fact Sheet. http://www.mayoclinic.org/diseases-conditions/endometriosis/diagnosis-treatment/treatment/txc-20236449. Accessed February 1, 2016.

7 Shah DK, Moravek MB, Vahratian A, Dalton VK, Levovic DI. Public perceptions of endometriosis: perspectives from both genders. Acta Obstetricia et Gynecologica Scandinavica. 2010;89(5):646-650.