A new UK parliamentary inquiry reveals lost income, limited workplace support and career setbacks for people with endometriosis, while international researchers call for better diagnosis and treatment guidelines.
Women living with endometriosis are losing jobs, income and career opportunities because of inadequate workplace support, according to a new parliamentary inquiry in the United Kingdom. The findings, released October 14, 2026, have prompted renewed calls for employers to recognize the serious effects of the chronic condition.
The inquiry by the All-Party Parliamentary Group on Endometriosis found that 47% of respondents had lost income because of their symptoms. Another 28% reported leaving a job, while 40% had turned down career opportunities because of difficulties associated with the condition.
The findings come as separate research from the University of Queensland identifies major gaps in international medical guidelines, including a widespread failure to involve patients in developing recommendations for endometriosis care.
Together, the reports raise concerns about how endometriosis is recognized and managed, both in healthcare settings and in the workplace.
Women Describe the Financial Cost of Endometriosis
Chloe Ward, a self-employed beauty professional from Bolton, England, described how years of severe pain affected her ability to earn a living.
She experienced symptoms for seven years before receiving a diagnosis of stage-four endometriosis in 2023. During that period, unpredictable flare-ups frequently disrupted her business and forced her to cancel appointments.
Working for herself provided some flexibility, but it also meant she had no guaranteed income when her symptoms prevented her from seeing clients.
Ward told BBC Radio Manchester that repeated cancellations had cost her customers and created significant financial difficulties.
She eventually paid approximately £6,000 for private surgery because of lengthy waiting times for treatment through the National Health Service.
Ward and her partner also spent around £8,000 on a third round of in vitro fertilization after two NHS-funded attempts were unsuccessful.
She is now awaiting a hysterectomy, which will require another period away from work.
Her experience illustrates the financial pressures facing people whose symptoms interfere with their employment, particularly those who are self-employed and lack access to paid sick leave.
Another woman, Megan Gomersall, described losing the nursing career she had worked to establish.
The 30-year-old former pediatric nurse from Rochdale has been unable to work for approximately two and a half years because of endometriosis symptoms.
Her condition affects her bladder and bowel, causing pain that made it increasingly difficult to complete shifts.
Gomersall said she frequently needed time away from work before doctors identified the condition, a process that took 13 years.
She described the effect on her professional life as a grieving process because she felt she had lost both her career and part of her identity.
Gomersall believes greater awareness and workplace adjustments could help others avoid similar experiences.
Parliamentary Inquiry Finds Widespread Problems
The parliamentary investigation, supported by Endometriosis UK, collected evidence from more than 6,200 employees with confirmed or suspected endometriosis and approximately 250 employers.
Its report, Endometriosis (Not) in the Workplace, provides detailed information about how symptoms affect employment and financial security.
Among respondents, 97% reported working while experiencing severe pain.
Another 94% believed employers lacked a good understanding of endometriosis, while 62% worried about losing their jobs.
Almost half said they had received no workplace adjustments to help them manage their symptoms.
The inquiry also found that 49% had experienced difficulties progressing in their careers, while 39% had reduced their working hours.
Financial hardship was common, with 39% reporting difficulties directly connected to the condition.
Among employers surveyed, 72% acknowledged that their organizations provided no training or guidance on women’s health.
These results suggest substantial gaps between employees’ needs and the support available in many workplaces.
The figures reflect the experiences of people who participated in the inquiry and should not automatically be interpreted as representing everyone with endometriosis.
However, the findings provide evidence of the challenges reported by thousands of affected workers.
What Is Endometriosis?
Endometriosis is a chronic condition in which tissue similar to the lining of the uterus grows outside the uterus.
The tissue can cause inflammation, scarring and pain, particularly in the pelvis.
Symptoms vary considerably and may include severe menstrual pain, persistent pelvic discomfort, fatigue, heavy bleeding and difficulties involving the bladder or bowel.
Some people also experience fertility problems.
The World Health Organization estimates that endometriosis affects approximately 190 million women of reproductive age worldwide, representing about 10% of that population.
Although symptoms often begin during adolescence, diagnosis can take several years.
The WHO estimates that the average time to diagnosis ranges from four to 12 years, depending on the healthcare setting.
Endometriosis currently has no definitive cure, but treatments can help manage symptoms.
Options include pain medication, hormonal therapy, surgery and multidisciplinary approaches to managing chronic pain.
Treatment decisions depend on symptoms, individual circumstances, potential side effects and whether a patient wishes to become pregnant.
Surgery may remove endometriosis lesions and scar tissue, but symptoms can persist or return.
Even hysterectomy does not guarantee that the condition or associated pain will disappear.
The physical effects can be accompanied by emotional and financial difficulties, particularly when people experience long diagnostic delays or struggle to access specialist care.
International Study Reveals Gaps in Medical Guidelines
A separate study led by researchers at the University of Queensland found major inconsistencies in how countries develop clinical guidelines for endometriosis.
The research, announced October 15, examined guidelines from 47 countries, including 19 published in languages other than English.
Researchers found that 70% of the reviewed guidelines had not incorporated the experiences of people living with endometriosis.
Professor Gita Mishra, from the university’s Australian Women and Girls’ Health Research Centre, said patient involvement was essential for improving diagnosis, treatment and self-care recommendations.
The study identified substantial differences in guidance relating to fertility care, medical treatment and nonmedical approaches.
Most guidelines came from higher-income countries, particularly European nations.
Researchers also identified gaps in Africa and the Eastern Mediterranean, where some countries lacked national endometriosis guidelines.
The findings suggest that access to consistent medical advice depends partly on where patients live.
The researchers were particularly concerned about the limited representation of younger patients.
One-quarter of the guidelines had not been informed by adolescents, despite evidence that symptoms and diagnostic delays frequently begin during teenage years.
Only one in five guidelines explicitly acknowledged gender-diverse individuals.
These gaps could affect whether medical recommendations address the needs of everyone living with the condition.
General Practitioners Need a Greater Role
The international study also found that fewer than half of the guidelines included input from general practitioners.
Dr. Dereje Gete, from the University of Queensland’s School of Public Health, said this omission was important because family doctors are often the first healthcare professionals patients consult.
General practitioners play a major role in recognizing symptoms, arranging investigations and making referrals to specialist services.
When guidelines do not reflect their experience, opportunities to improve early diagnosis may be missed.
Gete called for clearer minimum standards to help reduce differences in care between countries.
The research team plans to work with the World Health Organization on developing more consistent international guidelines.
Australia introduced updated national guidance in 2025 through the Australian Living Evidence Guideline: Endometriosis.
Researchers hope that broader patient participation and more consistent recommendations will improve access to appropriate diagnosis and treatment.
Employers Urged to Offer Practical Support
Endometriosis UK says many workplace improvements are relatively straightforward and do not necessarily involve substantial costs.
Possible measures include flexible working hours, additional breaks, time away for medical appointments and gradual returns to work following surgery.
Employers may also consider arrangements that allow employees to manage unpredictable symptoms without facing unnecessary disciplinary consequences.
The charity argues that greater understanding among managers and colleagues could help affected employees remain in their jobs and pursue career development.
It has called for endometriosis and other long-term menstrual health conditions to be included in future workplace health reforms.
The UK Department of Health and Social Care has acknowledged that endometriosis can have a devastating effect on women’s lives.
A government spokesperson said the renewed Women’s Health Strategy identifies the condition as a priority and recognizes the importance of improving healthcare and workplace support.
The parliamentary inquiry adds further pressure for changes to existing practices, particularly where employees experience repeated absences or difficulties requesting adjustments.
The findings also show why early diagnosis and workplace awareness are closely connected.
Workers who spend years seeking medical answers may struggle to explain their symptoms to employers, making it harder to obtain appropriate assistance.
For Ward and Gomersall, the effects have extended beyond physical pain to financial security, professional opportunities and personal well-being.
Endometriosis UK is now urging policymakers to incorporate the inquiry’s findings into the government’s developing Workplace Health System and its wider efforts to help people remain employed.
Meanwhile, the University of Queensland research team plans to work with the WHO on international clinical guidelines, with greater patient involvement among its priorities.
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