ENDOMETRIOSIS
IT’S TIME
TO END
THE STIGMA

How can we support people living with endometriosis if we don’t truly understand their reality?

Over 190 million people across the globe have endometriosis.¹ Yet, people with endometriosis are rarely given the opportunity to express their experiences to the healthcare industry. We’re here to change that. COUCH Health carried out a mobile ethnography study to get true insights into the realities of living with endometriosis. This eBook explores the findings of the study and discusses how the findings can be used to improve healthcare for people living with this condition.

Hearing from the experts

All participants were between 18 and 41 years of age.

All participants identified as female.

7 people identified as White, 2 people identified as Black Caribbean, 1 person identified as Black African, and 1 person identified as Mixed (White and South Asian).

All participants were between 18 and 41 years of age.

All participants identified as female.

7 people identified as White, 2 people identified as Black Caribbean, 1 person identified as Black African, and 1 person identified as Mixed (White and South Asian).

Understanding the day-to-day life

Participants were asked to engage in a total of 9 tasks across 6 days.

“Introduce yourselves”

Participants were asked to introduce themselves to each other on an online platform.

“How did you feel this morning?”

Participants were asked to share how endometriosis impacts them in the mornings by recording a short video.

“What’s your diagnosis story?”

Participants were asked to share their diagnosis stories by recording a short video.

“What is your worst symptom?”

Participants were asked to share their worst symptom through either an abstract or literal drawing.

“How does endometriosis impact you in the evening?”

Participants were asked to share their experiences of endometriosis in the evenings by recording a short video.

“If endometriosis was an object, what would it be?”

Participants were asked to share a drawing or photo of endometriosis as an object.

“Where do you find the latest information and support about endometriosis?”

Participants were asked to share where they found trusted information, and what support groups they were part of.

“How has endometriosis impacted your life?”

Participants were encouraged to share their endometriosis experiences on the online platform.

“How would you describe the perfect ally?”

Participants were asked to describe their ‘perfect’ endometriosis ally.

These tasks led to in-depth discussions between participants who shared both similar and different experiences, and revealed the difficult diagnosis journeys, and the excruciating daily symptoms that the participants faced.

Medical gaslighting is real

A number of participants reported that they had waited up to 25 years for a diagnosis, and medical gaslighting was a common experience.

“I started to question my own sanity on whether my pain was even real”

“I was told women of my colour don’t get endometriosis”

“Despite having a diagnosis, I then had to deal with jumping through hoops to try and see a specialist”

“It took my lung collapsing to finally get the support I needed”

Not just a ‘painful period’…

Depression

Fatigue

Bowel problems

Bladder problems

Hip pain

Chronic pelvic pain

Constipation

Miscarriage

Anxiety

Poor sleep

Nausea

Back pain

Infertility

Painful sex

Period pain

Nerve pain

Abdominal pain

…and not just a ‘white woman’s disease’

Transgender men, non-binary people, and people with other gender identities can experience endometriosis and often face hardships that are unique to them, and endometriosis can affect people from any ethnic background.

ENDOMETRIOSIS EXISTS OUTSIDE OF THE BINARY CONFINEMENTS OF CISGENDER IDENTITY AND IN ANY ETHNIC BACKGROUND. AND IT CAN COME WITH SERIOUS COMPLICATIONS THAT CAN SEVERELY IMPACT A PERSON’S A LIFE.
IT’S TIME TO END THE STIGMA

How we can start to end the stigma

Here are a few things we must do moving forward, to correct the misconceptions around endometriosis, and ensure people are getting the support they need.
You can read about these in more detail
in the eBook.

Ultimately, we must listen to patients.
Only then can we create change in the clinical trial industry to positively enhance the patient experience. And if you are a patient yourself, we encourage you to share your experiences — you are not alone, and together, we can end the stigma.

1

Improve education about endometriosis among healthcare professionals

2

Implement cultural safety training among healthcare professionals

3

Initiate more support groups for people living with endometriosis

1. World Health Organization [ONLINE]. Available at: https://www.who.int/news-room/fact-sheets/detail/endometriosis [Accessed February 2023]

ENDOMETRIOSIS IT’S TIME TO END THE STIGMA