Research Partnership

Endometriosis: hidden suffering and disease burden

Improving patient outcomes starts by listening to and understanding their needs. Research Partnership’s Living With reports give a voice to patients living with a variety of chronic conditions, by reporting on quantitative research undertaken directly with them.

Women’s health has been under the spotlight in recent years, as a much under-resourced area of investment.

Here we share key insights from the 2022 Living with Endometriosis report carried out in the US with over 100 patients, which highlights the pain and suffering experienced by over 10% of American females and explores what the pharmaceutical industry can do to support them.

Women living with endometriosis

For most girls, starting their period is a significant event; a milestone which marks the transition between childhood and womanhood. Calendars are marked, protection is stored in purses and spontaneous trips, sleepovers and pool parties require more logistical planning than was considered before.


Endometriosis symptoms usually begin at puberty, and for some, from their first period. For more than 60% of endometriosis patients, symptoms start before the age of 20. Without easily identifiable biomarkers, pathogens or non-invasive diagnostic tests to diagnose endometriosis, patients usually have to wait between 4-11 years from symptoms to receive a definitive diagnosis.


Even after diagnosis and prescribed treatment, endometriosis continues to place a significant burden on women and approximately seven in ten still suffer from heavy bleeding during their periods. However, when speaking to those living with endometriosis, the most challenging aspect is pain, which causes the greatest stress and takes a large emotional toll on women.


Most of the women we spoke to were receiving hormonal-based contraceptive or IUD treatment for their endometriosis. Around half were highly satisfied with their treatment, but many cited its main benefit as easy administration. Only one in three believed a reduction in their pain was a benefit of their prescribed treatment, and treated patients continue to rate their pain as severe. One 33-year-old patient told us: “[On treatment] I still feel my symptoms are severe enough for it to be debilitating sometimes or frustrating.” To help alleviate their pain the majority of women in our study also relied on OTC pain relief.

Information and desired support

Patients are increasingly seeking information and support outside of their doctor’s office, with nearly eight in ten looking to social media for endometriosis content. Awareness of the condition is increasing and celebrities such as Amy Schumer, Chrissy Teigen, and Halsey have spoken about the impact the condition has on their personal life, health, and fertility.

About the authors


Mariel Metcalfe, director, head of Living With

Mariel is the Head of Living With and has 18 years of pharmaceutical market research experience in a wide variety of qualitative and quantitative methodologies, including global tracker research and segmentation. She has worked in a variety of therapy areas including infectious, autoimmune, respiratory and metabolic diseases. Mariel has extensive experience in patient insights and is committed to bringing the patient voice to life. She has written multiple articles and hosts the podcast ‘Living with Chronic Illness’ which is designed to give a voice to patients suffering from chronic conditions.


Nicole Syms, associate director, Living With

Nicole is an associate director within the Living With team at Research Partnership, with nearly ten years of pharmaceutical market research in primarily quantitative methodologies and with a particular focus on patient research. Nicole has conducted patient research in a variety of therapy areas, including many autoimmune conditions, women’s health and other long-term or chronic diseases; providing a great understanding of how chronic disease impact patients’ lives and what makes patients’ experiences different from one another.

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