The long and arduous journey to endometriosis diagnosis

Again, Susen was not taken seriously by the seventh gynaecologist she visited within the last 12 years. “Menstrual pain is a common thing. It seems you just have a rather low pain tolerance.”

Imagine suffering years of debilitating pain and other life impacting symptoms, disrupting your social, educational and professional life as well as sexual relationships, all without knowing the cause. Your continual attempts to seek help are dismissed, plunging you into a rollercoaster of anxiety and depression. As a clinical research associate at Roche, Susen Jung is working in the health care sector herself, a career inspired by her own journey in trying to improve lives.

“It might come as a surprise that being diagnosed with a chronic disease was something that gave me huge relief.”
Susen Jung, 36
Clinical Research Associate

Worldwide, nearly 200 million women are affected by endometriosis.1 And just like Susen, many face a long road to a diagnosis. Despite its prevalence, research in endometriosis is underfunded and not adequately prioritised in clinical development, resulting in a limited understanding of the condition and few advancements in diagnosis and treatment.

Endometriosis symptoms overlap with other conditions, and due to a lack of knowledge about the disorder, women’s experiences are often normalised or dismissed altogether.

“My symptoms started at age 13 and quickly became so intense that sometimes I could not attend school before and during my menstruation,” says Susen. “As time passed, my life turned into monthly cycles of incapacitating pain and heavy bleeding which caused anemia, leaving me tired and very pale. At this time, I began seeking help, trying to find a physician that could explain my symptoms and help me manage them. However, other than being told that this exists ‘only in my imagination’, is just ‘bad menstruation pain’ or receiving the oral contraceptive pill, no physician was really able to help me.”

Andrew Horne is a leading global expert in the field of Endometriosis, and he knows how long and painful the wait for a diagnosis is for patients. “Surprisingly, despite the suffering and high prevalence of endometriosis, the fight for a diagnosis is often long and mentally and physically exhausting,” he says. “There is an average delay in diagnosis of seven to eleven years, with almost 50% of women being examined by five or more physicians prior to a correct diagnosis.”2

“The fight for a diagnosis is often long and mentally and physically exhausting.”
Andrew Horne
Professor of Gynaecology and Reproductive Sciences, University of Edinburgh

The delay in diagnosis has tremendous consequences. Andrew says this “can lead to a delay in treatment initiation, thus potentially causing the development of a ‘chronic pain state’. In addition, the psychological damage of not knowing the source of such debilitating pain and symptoms can impact sufferers’ mental health greatly.”

This was what Susen experienced in her journey. “By the time I received my diagnosis, the disease was already very advanced”, Susen explains. She recalls: “I was diagnosed with endometriosis using an invasive diagnostic surgery (laparoscopy). It might come as a surprise that being diagnosed with a chronic disease was something that gave me huge relief but the diagnosis gave me hope. Once I knew what was wrong, I figured I could finally do something about it.”

More research funding is needed to better understand endometriosis and advance diagnosis and treatments that will improve the lives of women in the future. In addition, greater awareness and education for women and healthcare providers to identify symptoms of endometriosis and remove stigma can help to ensure women’s healthcare needs are recognized and addressed in a timely way.

Roche is looking into improving the diagnosis of endometriosis to address the unmet medical needs and close this healthcare gap for women.

This is what gives Susen hope: “I believe nothing I experienced was in vain as I can share my journey with others, including healthcare professionals, who I feel can learn from it too. I would love to see more research in this disease area and ultimately a solution which enables women to avoid a similar journey as my own.”

Quick facts about endometriosis
  • Endometriosis is a chronic disease in which cells similar to those found in the lining of the uterus grow outside of the uterus, causing pain and/or infertility.

  • The condition affects 1 in 10 women of reproductive age3

  • Symptoms can include pain during periods or sexual intercourse, heavy bleeding, bowel and bladder problems, fatigue, depression, anxiety or infertility.

  • Many factors contribute to the development of endometriosis, making the disease particularly difficult to diagnose. Causes can include genetics, retrograde menstruation, cellular metaplasia or irregularities in periods.

  • There is currently no known cure for endometriosis, but treatments to manage and control the disease do exist.

Published undefined

References

  1. WHO | World Health Organization [Internet]. Endometriosis; [cited 2022 Jul 27]. Available from: https://www.who.int/news-room/fact-sheets/detail/endometriosis

  2. All Party Parliamentary Group (APPG) on Endometriosis. Endometriosis in the UK: time for change. 2020.

  3. Jean Hailes [Internet]. Endometriosis - fact sheet; [cited 2022 Jul 27]. Available from: https://www.jeanhailes.org.au/resources/endometriosis-fact-sheet

Stories of X

See all stories