The Cost of Waiting: What Endometriosis Teaches Us About Women, Work and Being Believed

A woman can build an entire career in eight years.

She can qualify, gain promotions, return from maternity leave, take on leadership responsibilities and establish herself as an expert in her field.

She can also spend those same eight years waiting for a diagnosis of endometriosis.
That statistic has become familiar enough to lose some of its power. The average time to achieve an endometriosis diagnosis in the UK remains around eight years. In Northern Ireland, where gynaecology waiting times remain the longest in the United Kingdom, the reality for many women may feel longer still.

Life does not pause whilst somebody waits for an appointment. Careers continue. Deadlines remain. Children still need collected from school and bills still need to be paid. For many women, the challenge is not simply living with endometriosis, it is living with endometriosis whilst continuing to meet the competing demands of everyday life.

According to analysis published by the Royal College of Obstetricians and Gynaecologists, almost 60,000 people were on gynaecology waiting lists in Northern Ireland in late 2024. Behind those numbers are women trying to navigate work, family life and professional ambition whilst living with conditions that often remain undiagnosed, untreated and misunderstood.

The Cost of Being Believed

One of the most consistent themes in conversations about endometriosis is not pain. It is disbelief.

Many women describe years of symptoms being minimised, normalised or explained away. Painful periods are framed as something to be endured. Fatigue is attributed to stress. Concerns are met with reassurance rather than investigation.

There is an interesting parallel here with many women's experiences at work. The need to evidence concerns repeatedly, the pressure to justify requests for support and the sense that credibility must be earned rather than assumed are not experiences confined to healthcare settings.

Over time, that takes a toll. When people become accustomed to explaining and defending their own experiences, they often become less likely to seek support, not because they need it less, but because they expect the burden of proof to sit with them.

The Workplace Cost We Rarely Measure

The workplace impact of endometriosis is often discussed in terms of absence, but the more interesting question is what happens when women are present.
By the time many women receive a diagnosis, they have often spent years adapting their working lives around symptoms. Annual leave is used for recovery rather than rest. Medical appointments are squeezed around work commitments. Energy that could be devoted to professional development is instead spent managing symptoms and simply getting through the day.

The appointment attended before work, the medication that affects concentration and the effort required to appear well enough to avoid uncomfortable questions rarely appear on a CV or a performance review. Yet they require effort all the same.
Colleagues see the presentation delivered, the meeting attended and the deadline met. What they do not see is the calculation that often sits behind it.

The challenge for employers is that this impact rarely appears neatly in absence statistics or management reports. Yet it can influence productivity, career progression, confidence and retention over a prolonged period.

What Good Employers Understand

The organisations making the greatest progress in this area are rarely doing anything revolutionary.

In most cases, they have recognised that chronic health conditions do not fit neatly within traditional workplace assumptions. Endometriosis rarely presents as a single period of absence followed by a full recovery. It is often characterised by fluctuating symptoms, ongoing treatment and uncertainty.

The practical response is therefore less about grand policy initiatives and more about creating an environment where people can perform at their best. That may involve flexibility around working hours, support to attend medical appointments, greater manager awareness or simply creating a culture where employees feel able to discuss health concerns without fear of judgement.

Importantly, support should not depend upon somebody having a diagnosis in hand.

There is also a legal dimension. Depending on its severity and impact, endometriosis may amount to a disability under disability discrimination legislation, potentially requiring employers to consider reasonable adjustments. However, the strongest workplace responses are rarely driven by legal obligations alone. They are driven by a recognition that retaining talented people and enabling them to perform at their best is simply good business.

From a business perspective, this should not be controversial. Organisations invest significant time and resources attracting, developing and retaining talented people. Creating conditions that allow those individuals to continue contributing effectively is not simply a wellbeing initiative, but rather good workforce planning.

Looking Beyond the Waiting List

The challenge for employers is not to become experts in endometriosis, or indeed any other chronic illnesses that could be experienced by its workforce.
It is to recognise that people do not always arrive at work with neat diagnoses, clear treatment plans or obvious signs that they are struggling.

In Northern Ireland, where thousands of women continue to wait for specialist care, employers cannot solve the pressures facing the healthcare system. They can, however, decide what kind of workplace experience employees encounter while they wait.

Most women living with endometriosis are not looking for special treatment. They are looking for the same thing any employee facing a health challenge would want: understanding, flexibility where it is reasonable, and the opportunity to perform at their best.

Sometimes that starts with something surprisingly simple.

Listening, and believing what you are being told.