74% of women with endometriosis felt dismissed by healthcare practitioners, survey finds

Menstrual cycle tracking app, Clue, digital pain and endometriosis platform, frendo, have joined forces to reveal alarming data about endometriosis diagnoses and suffering experienced among women.

A survey by Clue found that nearly three quarters (74 per cent) have had their symptoms and pain dismissed as “normal” by healthcare practitioners, and 67 per cent of endometriosis patients saw three or more doctors before receiving a diagnosis, leading to years of unnecessary suffering.

In time for Endometriosis Awareness Month, the survey of approximately 1,200 endometriosis sufferers on the Clue platform aims to address the critical issue of delayed diagnosis in people with endometriosis.

With a particular focus on young adults, the survey also uncovered how 50 per cent of those surveyed have experienced symptoms of endometriosis before the age of 17.

Additionally, at the time of an actual diagnosis, 9 in 10 respondents were experiencing moderate to severe symptoms.

Endometriosis is one of the most common and isolating chronic illnesses, affecting every 1 in 7 people with periods, yet has an average diagnosis delay of 7 to 11 years.

Identifying, diagnosing and treating the early signs of endometriosis could limit severe damage to health in later life, such as infertility.

Dearbhail Ormond, Founder and CEO of frendo and endometriosis sufferer, said: “My own journey with endometriosis started at 15 years old and eventually led to a hysterectomy in 2023 at the age of 41 to mitigate the chronic and life altering pain I was experiencing as a result of endo and adenomyosis.

“I believe some of my previous surgeries could have been potentially prevented with earlier intervention when I was young.

“Without early diagnosis of this disease, underlying health concerns can become severe, causing issues from organ damage to impacted fertility, severely affecting a woman’s quality of life.”

Rhiannon White, CEO of Clue, said:  “Our survey findings highlight how critical it is for individuals to have objective records of their symptoms when seeking medical attention.

“Clue is like the canary in the cycle coalmine, helping members know what’s normal and what isn’t on their path to diagnosis, while frendo provides specialized support and community for those managing endometriosis. Together, we want to help to eliminate the current diagnosis delays, and support individuals from first symptoms, through diagnosis and beyond.”

The normalisation of girls’ and women’s pain, specifically menstrual pain, has serious consequences in terms of overall health, mental health and quality of life.

Clue’s survey also found that 67 per cent of endometriosis patients saw three or more doctors to get their diagnosis and 46 per cent of those under 23 still waited more than a year to seek help for their symptoms, or are yet to seek help, indicating that more awareness is needed.

Most concerning is the knowledge gap amongst young adults.

A recent survey from frendo showed that 18-24 year-olds were the least aware of what endometriosis is – with some mistaking it for a skin condition (15 per cent), a bowel issue (10 per cent), or even a fabricated illness (6 per cent), delaying seeking and being offered the right treatment.

Clue and frendo’s partnership aims to help young people better understand their bodies earlier, to advocate for themselves and know when to seek help – potentially saving them years of unnecessary suffering from conditions like endometriosis.