May 9, 2019 / All Stories

Evolving the Endometriosis Conversation

Compared to three decades ago, more information about endometriosis is available, but experts are still working to reach more women.

Women’s Health?

It was 1991. Kids were getting a taste of Super Nintendo. Teens were glued to the drama on Beverly Hills, 90210. Adults were happily listening to CDs for their music. And 22-year old Beth Battaglino, RN, was living life fresh out of college.

Beth Battaglino, RN, started her career at HealthyWomen in 1991, and later pursued her nursing degree.

Battaglino accepted a position as a program coordinator with HealthyWomen – a nonprofit just getting off the ground providing health information to women across the country (something fairly unheard of in that era of acid-wash jeans).

“I look back and laugh, because (at the time) I had to explain what women’s health even was,” Battaglino says. “On top of that, everything was direct mail and toll-free numbers. That was how people got information.”

It was Battaglino’s job to answer calls, using those inquiries to create an information database for themed newsletters that were snail-mailed to women. After just a few weeks, Battaglino realized she kept getting the same types of questions, mainly about osteoporosis and breast implants.

She says pelvic health conversations centered on pregnancy.
 

Whispers of Endometriosis

Around this important time in Battaglino’s life, John Duffey, vice president, U.S. specialty, AbbVie, was starting his career as a pharmaceutical sales representative. His area of focus was women’s health.

John Duffey, vice president of U.S. Specialty, AbbVie, started his pharmaceutical career in women’s health.

“My first role in the field helped me better understand the discomfort women experience and further raise awareness to the disease,” Duffey admits.

His passion for better education and care in women’s health continued to grow after helping his own mother understand that her painful periods -- where she could barely stand, her excessive bleeding and her fatigue -- were not normal. With some guidance from Duffey, his mother finally had a thorough conversation with her doctor, and in her mid-40s was diagnosed and treated for endometriosis.

At the time, Duffey says there wasn’t as much information available about endometriosis compared to what women have access to today. Now, doctors know it is estimated that 1 in 10 women suffer from endometriosis in the U.S.1

“Compared to the number of women who have endometriosis, there’s still a gap and awareness remains relatively low. We are trying to change that,” Duffey says. “With the help of organizations like HealthyWomen, progress is being made, awareness is increasing and women are getting the help they need.”

More recently, celebrities like Julianne Hough are vocal about their painful symptoms and the impact endometriosis has had on their lives. Endometriosis hashtags emerged. From 2015 to 2017, the number of articles about the disease nearly doubled.

In 2016, HealthyWomen acquired Women’s Health Foundation.

"We were able to put a stake in the ground in pelvic health, and do what we do best, which is create trusted content and awareness for topics important to women,” says Battaglino. “We provide the information on multichannel platforms so a woman can search and receive information in a format that works for her.”

The nonprofit’s first national program was called “What’s Going on Down There?” Part of the campaign included a huge billboard in Times Square. Today, one of the top five searches on the HealthyWomen website is about menstrual health and pelvic pain.
 

Speak Up Some More

Battaglino eventually earned her nursing degree, is still at HealthyWomen, and now serves as their CEO. The pattern she’s noticed among women with endometriosis is the delay in diagnosis, like Duffey’s mother. The average is 7-12 years from the time women experience symptoms.2

Today, Beth Battaglino still sees patients while also serving as CEO of Healthy Women.

One driver of the delay is that more women are waiting to have babies.3  "HealthyWomen has seen a big uptick with first-time moms in their 40s,” Battaglino says. “Many of those women didn’t realize they have endometriosis until they started trying to get pregnant. We need to reach them earlier.”

At AbbVie, Duffey oversees teams that are helping to advance endometriosis care by improving the patient-physician dialogue, elevating the public conversation and investing in the research. Each day as he looks at the work being put in to close the gap, the women in his life - his mother, three young daughters and wife – fuel his passion to achieve more in women's health.

“Their voices and their health are important to me, and that’s why we’ve put great emphasis on improving the conversation between women and their doctors by further educating OBGYNs,” Duffey says.

Battaglino says HealthyWomen is also working to educate other health care providers, since their research shows not all women go to an OBGYN for their annual exam.

“We’ve come a long way with this important conversation in women’s health, but there’s still more work to do,” Battaglino says. “If we all work together, we’ll get there.”
 

References:

  1. Frequently Asked Questions Gynecologic Problems. The American College of Obstetricians and Gynecologists. Copyright October 2012.
  2. Hackethal, MD, Veronica. Endometriosis Must Come ‘Out of the Shadows’: New Review. https://www.medscape.com/viewarticle/910231#vp_1. March 12, 2019.
  3. National Vital Statistics Reports. Volume 67, Number 8. Births: Final Data for 2017. by Joyce A. Martin, M.P.H., Brady E. Hamilton, Ph.D., Michelle J.K. Osterman, M.H.S., Anne K. Driscoll, Ph.D., and Patrick Drake, M.S., Division of Vital Statistics. https://www.cdc.gov/nchs/data/nvsr/nvsr67/nvsr67_08-508.pdf. Accessed April 9, 2019.

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Antoinette Haubert
Email: antoinette.haubert@abbvie.com
Call: + 1 847-936-5382
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