Endometriosis patients seeking diagnosis told 'come back when you want to get pregnant'

Menstrual and reproductive health app Clue has revealed some shocking results from its recent survey from members who live with endometriosis.

For endometriosis awareness month in March, they polled more than 1,200 Clue members with endometriosis across the UK, USA, Canada, and Germany, with their findings highlighting the battle patients experience trying to have their pain and symptoms taken seriously.

Endometriosis is estimated to affect 10% of women globally, yet 60% of those with the condition currently go undiagnosed. Those who responded to Clue's survey revealed feeling let down by healthcare professionals who often mistook endometriosis for "just a really bad period”, or even suggested to some patients their pain "was psychosomatic".

The survey found that 74% of respondents felt their symptoms were dismissed by healthcare providers, indicating a gap in diagnosis and support, with 67% of respondents stating they saw three or more health care professionals (HCP) to get a diagnosis and 10% sharing they had to see more than 10 HCPs about their symptoms before being diagnosed.

The findings come after a new survey published by Endometriosis UK revealed that it now takes a year longer than before the Covid pandemic to access a diagnosis in the UK, with waiting times in England and Scotland increasing to an average of eight years and 10 months, whilst patients in Northern Ireland (the only region of the UK without a women's health strategy), are left waiting nine years and five months, and patients in Wales nine years 11 months.

Many of the respondents to Clue's survey revealed heartfelt stories and shocking barriers to having their pain taken seriously. One respondent said: “I was often told to ‘come back when you want to get pregnant’". This is despite the fact that endometriosis is one of the leading causes of infertility.

Another respondent shared: "Prior to my diagnosis I thought it was in my head. Afterwards, the surgeon told me, it was everywhere and if I waited much longer I would have had to remove reproductive organs. I was 15."

Speaking about the survey, Audrey Tsang, CEO of Clue, said: “We constantly hear from our Clue community about how the healthcare system fails us when it comes to taking our menstrual and reproductive health experiences seriously – how it marginalises our pain, brushes off our symptoms, disregards our intelligence, and denies our agency. Our endometriosis survey results are another heart-breaking reminder of this reality.”

Tsang added: "Centuries of bias and blind spots in medical research have contributed to conditions like endometriosis being so under-served. From our survey, the need and potential for non-invasive, accessible options to help support diagnosis is clear.

"While we wish the healthcare system didn’t require so much self-solving on the part of women and people with cycles, we know that self-tracking and being able to present that data to a healthcare provider helps make what can otherwise feel like an invisible and lonely experience, visible and actionable. Because tracking provides data, that data provides insight, and insight enables agency when it comes to our health."

Clue users can enter their diagnosis of endometriosis in the My Health Record feature of the app as part of the company's recently announced initiative to build the world’s largest data set linking menstrual cycle and symptom data to health conditions. This will be used in research projects, with some of the focus areas including improving early diagnostics for conditions like endometriosis and PMDD.

What is endometriosis?

Endometriosis is a common inflammatory disease impacting 190 million people around the world. It occurs when endometrial-like tissue grows in areas around the body, often causing painful symptoms such as chronic pelvic pain, painful periods, painful bowel movements, painful urination and painful sex. Excision surgery is the gold standard treatment for endometriosis, although access to this care can be limited. When left untreated Endometriosis can lead to chronic pain, infertility, poor quality of life, and other complications.

Sarah McCann is a Trends Writer for NationalWorld who specialises in stories around TV, Film and Health. If you liked this article you can follow Sarah on X (Twitter) here. You can also share your thoughts in the comment section below.