March is Endometriosis Awareness Month. To highlight the urgent need for medical innovation and faster pathways to care, we spoke with two women, Lizzy (57) and Erica (32), to discuss their decades-long journeys with endometriosis.

While their stories began nearly 30 years apart, they share a common thread: a persistent struggle to find answers for symptoms that were often misunderstood or attributed to other causes.

The challenge of getting a diagnosis

For both Lizzy and Erica, the first signs of endometriosis appeared in their early teens. Lizzy recalls that by her late teens, the pain had become chronic. “It wasn’t just connected to my period; the pain was there more or less all the time,” she says. Similarly, Erica experienced severe cramps and gastrointestinal issues as a teenager, but was initially told her symptoms were likely related to IBS or stress.

The path to an accurate diagnosis was often winding. Lizzy remembers an instance where her pain was dismissed as a psychosomatic reaction to moving away from home. Erica faced similar hurdles, visiting emergency rooms repeatedly only to be sent home when standard ultrasounds showed no clear cause for her agonizing abdominal pain.

Decades of managing a complex disease

Once diagnosed, both women began a long process of trial and error to manage their symptoms.

Lizzy’s journey has spanned over 15 surgeries to treat extensive scar tissue and adhesions caused by the disease. Over the years, she has utilized various hormonal treatments – some of which are no longer in use today – to manage the pain. Now having passed menopause, she still deals with the long-term effects. “The scar tissue means I am never entirely pain-free,” Lizzy explains, “but the constant fatigue that comes with the disease is often the hardest part to manage”.

Erica’s experience highlights the complexity of the disease’s physical presentation. Her lesions grew superficially on the surface of her organs, making them particularly difficult to detect through standard diagnostic methods. It wasn't until a specialized surgery that she finally found significant relief from the nerve pain that had left her bedridden. Today, she continues to manage systemic inflammation that often leaves her feeling flu-like and exhausted.

Career, resilience, and hope

Despite the physical toll, both women have shown remarkable resilience in their professional lives. Lizzy, a medical researcher, credits flexible working hours and supportive colleagues for enabling her to maintain a demanding career. Erica, who previously worked as an environmental inspector, is currently pursuing a degree in journalism, though she still has to balance her studies with the unpredictable nature of her symptoms.

When asked what advice they would give to others, both emphasize the importance of self-advocacy and early intervention.

“Don’t give up, even if you have to see several different doctors to get an investigation,” Lizzy advises. “The sooner you receive a diagnosis and treatment, the more you can do to reduce potential complications”. Erica echoes this sentiment, stressing that early pain management is vital: “In hindsight, I realize that if I had received the right treatment during the acute phase, I likely wouldn't be dealing with as much chronic pain today”.

The need for non-hormonal innovation

The stories of Lizzy and Erica underscore the urgent need for better diagnostic tools alongside effective, tolerable, non-hormonal treatments. While awareness has increased significantly over the last decade, the fundamental challenges of managing endometriosis remain.

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