What’s Not Normal About That Time of the Month
Unearthing what is and isn’t normal about that time of the month may be the key to empowering women to discuss endometriosis.
Pain Brushed Off as Normal?
Imagine that every month you experienced pelvic pain, and for up to a week every month you suffered from cramping, fatigue and may experience painful urination or bowel movements. For some women this is normal, but is it actually a normal part of being a woman?
Affecting an estimated one in 10 women1 and marked by pelvic pain, endometriosis occurs when tissue similar to that normally found in the uterus (endometrium) grows outside the uterus.2
A recent survey* revealed that while the majority of women have heard of endometriosis, few (29 percent) can identify all its painful symptoms.3
We spoke with Beth Battaglino, CEO of HealthyWomen, about the condition and findings from “What Do You Know About Endometriosis?," an online survey conducted in the U.S. by HealthyWomen in partnership with AbbVie among 1,211 women over the age of 18 and 352 health care professionals.
A registered nurse, Battaglino divides her time between caring for patients and creating programs through HealthyWomen that educate, inform and empower women to make smart health choices for themselves and their families.
Here, Battaglino discusses what the survey results mean for women and health care providers (HCPs), and how the results can help improve our understanding of the condition.
Q: Based on the survey results, it seems that women have heard of endometriosis, but do not have a full understanding of its symptoms. Why?
A: Yes, our survey reflects that exact statement – 81 percent of the 1,123 women who responded had heard of endometriosis4 – but the disconnect is most women may not immediately think ‘I have endometriosis’ because they are not aware of the symptoms. Women may think, ‘this is part of my monthly period’ or ‘I just have severe cramping.’ Therefore, they don’t have a conversation regarding their discomfort during their visit with their HCP.
Q: What are some of the barriers to getting an endometriosis diagnosis?
A: Not understanding that symptoms like painful cramps, pain during urination or bowel movements, pain during sex and heavy bleeding could be something more, or being embarrassed to have a conversation with their HCP. We want to encourage conversation with health care providers, so when women have an annual visit with an OB/GYN, they ask ‘Is this normal?’ And if it is endometriosis, to discuss a treatment plan that is right for her.
Q: How does awareness/understanding compare to other diseases women experience?
A: The interesting thing about endometriosis is that women seem to have heard the word – but do not fully understand the signs and are not talking about their symptoms with their HCP. Women can go up to 10 years without with a proper diagnosis of endometriosis. With other diseases like HPV, you have diagnostic tests and guidelines based on age of when they need to be done. That doesn’t exist for endometriosis.
81% of women surveyed have heard of endometriosis, but only 29% recognize all of its symptoms.5
60% of women rarely speak to friends, family or others about pelvic pain.6
Nearly half (47%) of the 219 women in the survey who had endometriosis said their HCP described the symptoms as "normal."7
Q: What surprised you with these survey results?
A: That endometriosis is one of the most common gynecologic disorders but women are not aware of the symptoms.
Q: What one thing would you want women to understand about endometriosis?
A: If you are experiencing abdominal pain, cramping or pain during intercourse, urination or bowel movements that these symptoms may be more than just period pain. And that it’s really important to educate yourself and have that conversation with your health care provider and get the proper diagnosis.
Q: What do you hear most from women with endometriosis?
A: They did not realize that the pain they had was endometriosis. They have lived with it for a while before getting diagnosed.
Q: What would you like women to do in light of this survey?
A: I want women to be able to recognize the symptoms of endometriosis and have a conversation with their health care provider. I want to reduce that six- to 10-year period before proper diagnosis.
Q: Is there anything you’d like to add?
A: March is Endometriosis Awareness Month and HealthyWomen is pleased to raise awareness on the gaps of understanding among both women and health care providers regarding endometriosis.
For detailed survey results visit HealthyWomen.org and to learn more about endometriosis visit MEinEndo.com.
*The "What Do You Know about Endometriosis?" survey was conducted within the U.S. 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.
1 American College of Obstetricians and Gynecologists: FAQ Endometriosis. http://www.acog.org/-/media/For-Patients/faq013.pdf
2 NIH: National Institute of Child Health and Human Development: Endometriosis. https://www.nichd.nih.gov/health/topics/endometri/Pages/default.aspx
3 HealthyWomen. "What Do You Know about Endometriosis?" Survey. HealthyWomen and AbbVie. http://www.healthywomen.org/content/article/what-do-you-know-about-endometriosis-0
4 HealthyWomen. "What Do You Know about Endometriosis?" Survey. HealthyWomen and AbbVie. http://www.healthywomen.org/content/article/what-do-you-know-about-endometriosis-0
5 HealthyWomen. "What Do You Know about Endometriosis?" Survey. HealthyWomen and AbbVie. http://www.healthywomen.org/content/article/what-do-you-know-about-endometriosis-0
6 HealthyWomen. "What You Don’t Know about Endometriosis – But Should" Survey. HealthyWomen and AbbVie. http://www.healthywomen.org/content/article/what-you-dont-know-about-endometriosis%E2%80%94-should
7 HealthyWomen, "What Do You Know about Endometriosis?" Survey, HealthyWomen and AbbVie. http://www.healthywomen.org/content/article/what-do-you-know-about-endometriosis-0
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