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.

For women starting their period, it can be an empowering new chapter, and after becoming used to the process, is relatively manageable. However, for around one in ten US women, their periods are going to mark the start of something worse; not only will they need to manage their calendars around certain times of the month, but pain medication may also be required. Endometriosis is a condition where tissue, similar to the lining of the womb, starts to grow in other places, such as the ovaries and fallopian tubes.

Diagnosis

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.

In our 2022 Living with Endometriosis US study, we spoke to 101 endometriosis patients, many of whom reported suffering for years before seeking healthcare professionals’ (HCPs’) advice. Endometriosis often runs in families: if a family member has been suffering, but hasn’t had a diagnosis or sought medical help, it can mean young women follow on the same path. A 40-year-old patient explained: “I didn’t see the doctor for years because my mom did not know any better. My mom was not going to take me to the doctor.”

Based on our research, over eight in ten patients suffer from heavy, painful periods prior to their endometriosis diagnosis and manage their symptoms with over-the-counter (OTC) pain relief and heat pads. Periods tend to get progressively heavier, more painful and the disruption to school, employment, and family becomes too much to bear at which point, the sufferer usually then reaches out to the OB/GYN.

Impact

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.

Around one in four women we spoke to have also been diagnosed with depression or anxiety. One 46-year-old described a day on her period feeling like: “I do not want to talk to anybody, I want to isolate myself. However, the more isolated I am, the more I get into my head. I start to have dark thoughts.” Women are highly anxious that their condition will worsen and how they will cope in the future.

Nearly half of women feel less confident in their body because of endometriosis and two in five feel the condition has a significant impact on their sexual drive, again affecting their relationships. One 25-year-old explained her mood as: “I’m just lacking in motivation, sometimes I just do not feel like being intimate due to the pain”.

Along with the mental and emotional impact, endometriosis also has a practical, educational, and sometimes financial impact. Most endometriosis patients are employed and four in five miss days from employment or study per month due to their condition.

Treatment

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.

With limited treatment options and few that directly treat pain, patients are often prescribed multiple types of birth control over the years. Birth control is not only relatively ineffective against pain, but side effects are common. According to patients in our study, side effects are the primary drawbacks of their treatment, and the main reasons for switching medications.

Our research identified that patients’ greatest unmet need is a treatment that can reduce heavy bleeding and provide long-lasting symptom relief from pain. In 2018, the writer and actress Lena Dunham wrote an article for Vogue stating that after a decade of excruciating pain and eight prior surgeries, she took the drastic step of having a hysterectomy at the age of just 31. Patients often have multiple surgeries for their endometriosis, but it is usually not a permanent solution.

For 40%-50% of patients who undergo (non-hysterectomy) surgery, symptoms will recur within five years. Around one in five women we spoke to regretted not telling their doctor more information at their most recent visit, and their main concerns often centred around surgery. One 46-year-old women told us: “I always have the question of should I just get a hysterectomy? Should I just cut it all out? Am I ready internally and mentally to have a hysterectomy?”

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.

Of the women we spoke to, those who had been diagnosed within the last three years claimed to be more knowledgeable and knew a lot about the condition before diagnosis (vs. those diagnosed more than three years ago).

Increasing public awareness and education around how to recognise endometriosis symptoms are likely to lead to increased diagnosis. Pharma-sponsored PR could help to encourage young women to seek HCP help earlier, and not suffer in silence for years.

Health and wellness are a large part of many young women’s lives, but its association with endometriosis is not yet well known. Filling this knowledge gap provides women with a chance of implementing lifestyle habits which can help ease their endometriosis symptoms. A 47-year-old stated: “I would like more holistic options, but I do not know that the science is there in terms of how things like lavender interact with the oestrogen system. I would like to see more dietary information and support.”

To support the 6.5 million women in the US with endometriosis, pharma companies can not only develop more effective treatments, but also increase general awareness and facilitate more open dialogue between patients and their family, employers, and doctors about the condition. For endometriosis, no publicity is bad publicity.

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.

Research Partnership, an Inizio Advisory Company, is a world-leading custom and syndicated global insights partner for health and life science companies. We optimise commercialisation success through evidence-based, story-told insights and recommendations that leverage custom market insights, syndicated real-world insights, and market access insights for the entire product lifecycle to empower better decisions and create long-term value for patients.

“Living With” is a series of reports based on quantitative and qualitative market research with patients, providing comprehensive and cost-effective insight into the patient journey from pre-diagnosis to stabilisation. We are continually expanding our reports to cover a large range of therapy areas and markets. To find out more information please visit:
researchpartnership.com/livingwith

Find out more about our Living with Endometriosis US 2022 report

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