The Long Road to Managing Life With Endometriosis: Women Speak Out

Hormone therapy is commonly used to help manage the symptoms of endometriosis, but as important as these medications are, many people living with endometriosis experience long and difficult journeys to find the right treatment and manage side effects.

Results of Health Union’s Endometriosis In America 2019 survey of more than 1,200 women diagnosed with endometriosis reveal nearly four in 10 have tried five or more different hormone therapies in an attempt to better manage their condition. This subset of patient respondents is on the younger side – 73% are 34 and under – and has experienced symptoms before the age of 18.

This group of people is also more likely than those who have tried one to four hormone therapies to have seen six or more different doctors before receiving an endometriosis diagnosis, revealing a complicated journey from the very beginning. They are more likely than the subset of women who have used one to four hormone therapies to describe their endometriosis as severe and are more likely than the rest of the survey respondents to have had three or more laparoscopies. These patients indicated that they feel like they have tried everything possible to manage their condition; however, their symptoms are still not controlled.

Online health communities like Health Union’s Endometriosis.net offer a safe place for people living with chronic health conditions to connect with others and find information, validation, and support. Endometriosis.net patient contributor Fela M’tima Dunfee advised fellow patients not to be afraid to talk to their doctors about switching hormonal treatments or asking about different treatments to work alongside hormone therapies. “Though difficult, it’s important to not lose hope until you find something that gives you results,” she said.

With all of the different ways patients can learn about treatments, how can pharma marketers better reach people living with endometriosis, particularly those who may be struggling to find the right kinds of hormone therapies? With endometriosis specifically, marketers should aim to differentiate their products in a way that helps patients overcome negative associations that exist within the current treatment landscape.

In a time when people have so many treatment options and information sources, it’s increasingly critical for marketers to consider when and how people interact with health resources online. It’s necessary to recognize that in people’s search for information, they often seek connection with other patients and validation for their experiences. When they find it, people feel equipped to make better health decisions and experience better outcomes.*

Health Union’s approach to cultivating sustainable online health communities through meaningful patient engagement helps industry partners uncover and address the drivers and barriers to treatment. This approach enables marketers to:

  • Integrate qualitative and quantitative insights to understand people’s wants and needs so marketers can focus on reaching patients with the right messages, in the right place and at the right moments in time.
  • Participate directly in the conversation through custom media opportunities–enabling marketers to efficiently attract and engage the right audiences.
  • Participate indirectly by targeting media placements around content that’s most relevant to patients, ensuring a broad reach beyond social and community platforms.

For more information on how Health Union can help you create smarter, more effective programs for patients and caregivers, click here to learn more about our business solutions.

*Reblin M, Uchino BN. Social and emotional support and its implication for health. Curr Opin Psychiatry. 2008;21(2):201–205.

Hahn RA, Truman BI. Education Improves Public Health and Promotes Health Equity. Int J Health Serv. 2015;45(4):657–678.