The Policy Gap in Women’s Health: Why Endometriosis is Still Underfunded
Introduction
From the starting blocks of international swimming arenas to the thin mattresses of hospital beds; my turning point came through a healthcare system that dismissed and misdiagnosed my pain. Unfortunately, my tale of misdiagnosis, dismissal, and delay, is emulative of a broader trend in our healthcare system, where women wait an average of 8 to 10 years to receive an official endometriosis diagnosis, giving rise to personal, financial, and economic costs often overlooked and underestimated.
This article argues that such neglect and misunderstanding of women’s health conditions is the result of the systemic gender bias that plagues our healthcare systems. This reality becomes evident when comparing the extent to which endometriosis receives funding and research, relative to non-gender specific conditions such as diabetes or Crohns.
By highlighting these disparities, it becomes clear that endometriosis (as a case for women’s health conditions more broadly) is severely underfunded relative to its socio-economic burden, prevalence, and consequences, leading to the suggestion that our health policy urgently needs reform to ensure women’s needs are recognised and supported within our healthcare systems.
The Burden of Endometriosis
While statistics vary, studies generally estimate that endometriosis affects 10-15% of women worldwide, despite health insurance companies and stakeholders historically underestimating its prevalence as less than 1% (Harder et al.). In England, 262,000 women had an endometriosis diagnosis at the end of 2021, which equates to an age-standardised rate of 1,067 per 100,000 (House of commons)
In affected patients, symptoms arise when endometrial-like tissue grows outside the uterus, causing chronic and inflammatory reactions. Some patients may be asymptomatic (showing no symptoms), while others may experience a spectrum of pelvic pain, dychezia, lower back pain, dyspareunia, infertility, constipation, diarrhea, and dysmenorrhoea. The World Health Organization (WHO) acknowledges the severity of these symptoms and their impact on pain, fatigue, depression, and infertility. Due to the nature of chronic pain, diagnostic delays and a broad spectrum of associated symptoms, it is assumed that endometriosis patients have a poor quality of life.
These difficulties are exacerbated by the absence of a definitive cure. While existing medical treatments exist, such as pain management and birth control, studies suggest these induce ‘intolerable’ side effects, minimal pain relief, can be entirely ineffective, and are incapable of addressing infertility issues (Ellis et al.). This leaves endometriosis patients at a loss – with no clear treatment pathways that are both safe and effective. Essentially, these women are condemned to a life of chronic pain. It’s our responsibility to question whether this needs to be the case. Is there really no cure? Or is it that endometriosis (and more broadly women’s health conditions) has been so severely underfunded and under researched that we just don’t quite know yet?
In terms of the economic burden of endometriosis, when we consider the healthcare costs associated with surgery (29%), monitoring tests (19%), hospitalization (18%) and physician visits (16%) (Simoens et al.), studies have shown the total cost per woman with endometriosis per year is around €9579 (Harder et al.). Others place the overall figure at US$1459 to US$20,239 (2022) per patient per year (Darbà and Marsà). These figures don’t even consider the economic burden of endometriosis patients unable to work full-time, potentially relying on external state-assistance, both of which engenders productivity loss. This economic burden is huge and affects everyone, men and women alike.
The associated costs of endometriosis are further exacerbated by the lack of effective diagnostic procedures. As it stands, the most effective procedure for diagnosing endometriosis is via laparoscopy (keyhole surgery). This is, of course, expensive. Perhaps more importantly though, and as with any surgery, this increases risks of adhesions and scar tissue residue which exacerbate symptoms, particularly if the endometriosis is not removed.
Unfortunately, the medical community has no solution to this problem. Alternative diagnostic means such as transvaginal ultrasound have proven to be less accurate (Harder et al.), while MRI suggestively only finds deep infiltrating endometriosis, not superficial. Furthermore, despite small advancements in diagnostic tools, conclusive evidence about the aetiology of endometriosis is still lacking and, despite advances in the development of biomarkers for a range of other diseases, there are still no reliable biomarkers for endometriosis. This indicates a significant gap in knowledge which, alongside the cost and risk of current diagnostic methods, perpetuates diagnostic delays. Women are likely to face delays of between 3.5 and 13 years before receiving an official diagnosis. 13 years is over a decade, plenty of time to develop unhealthy coping mechanisms, turn to self-blame, confusion and depression, potentially reaping irreversible damage on the women suffering without any explanation for their pain.
Indeed, not only does our abject lack of effective and safe diagnostic procedures exacerbate the economic burden of endometriosis, but it also has severe personal and emotional implications on the patients themselves. One study showed that time taken to be diagnosed was associated with increased symptom intensity and risk of central and peripheral sensitization (Ellis et al.). In other words, the longer it took to be diagnosed, pain and symptom experience intensified. The latter is compounded by the higher pain sensitivity experienced by women as opposed to men, due to complex interactions of anatomical, hormonal and psychological factors.
Worsening symptom experiences may be due to the progressive nature of endometriosis, or the likelihood that living with chronic pain increases pain sensitivity, particularly when one has no idea what the root cause of pain is. Increased symptom intensity and sensitization lend itself to additional healthcare costs – women without answers, as in my case, come to develop unhealthy coping mechanisms such as eating disorders which, in combination with existing endometriosis, increase propensity toward anxiety and other mental health conditions. In fact, a 2023 study by Yale University found that women with endometriosis are genetically predisposed to depression, anxiety, and eating disorders (Backman, 2023).
Furthermore, systematic reviews and meta-analyses have shown that women with endometriosis have higher rates of co-occurrence of gastrointestinal diseases (such as irritable bowel syndrome and inflammatory bowel disease), immunological diseases (such as rheumatoid arthritis and psoriasis), and cardiovascular diseases (such as coronary heart disease), compared to women without endometriosis (Kirk et al., 2024). These findings add credibility to the assertion that endometriosis is a whole-body condition with symptoms and consequences that extend far beyond just reproductive health.
The consequences of endometriosis, spanning physical symptoms to the onset of mental and emotional disorders, place both huge burdens on healthcare systems, and on the economy. Women, left without answers or treatments, experience worsening pain intensity and physical symptoms, triggering existing predispositions for additional health issues such as anxiety, depression, and eating disorders, further disenabling them to work and contribute to the economy, while they wait for treatments that, as it stands, are ineffective, dangerous, and lack the holistic approach evidently needed.
How Funding for Endometriosis Compares to Other Conditions
The statistics demonstrate that endometriosis is a severe condition engendering significant economic, financial and personal costs. Despite this, research funding for endometriosis is limited. In 2022 in the US, the National Institute for Health (NIH) contributed 0.038% of the health budget for endometriosis research. To put this into perspective, Crohn’s disease, affecting 0.21% of the US population, received $90 million in funding (2022), which translates to $130.07 per patient, over 65 times more per patient than for endometriosis.
The NIH is the largest source of biomedical research funding globally. It allocates nearly $48 billion USD annually to the study of various diseases and conditions. The 2022 funding allocation for women with endometriosis equated to around $2.00 per patient per year. If we consider the estimated annual cost per patient with endometriosis to be between $1000 and $20,000 as previously discussed, $2.00 doesn’t really meet the demands. Comparatively, roughly 12% of women in the US are expected to suffer from diabetes. Assuming half of the diabetes research budget is allocated to female patients, even this will equate to $31.30 per woman per year, significantly more than the allocation for endometriosis.
Across the waters, the European Commission (EC) fares no better when it comes to prioritising endometriosis. It wasn’t until 2024 that researchers began to identify how well-known and well-studied endometriosis was within researcher and policy-making communities in Europe, leading to the conclusion that both endometriosis and women’s health more broadly remain severely underrepresented in research funding (Viganò, Maíra Casalechi and Marie-Madeleine Dolmans, 2023). This same study found that other non-malignant disorders, such as anxiety, Crohn’s disease, dermatitis, alongside other problems such as male infertility, received considerably more funds than endometriosis.
Why is endometriosis so underfunded? Many suggest these funding disparities result from historical misunderstanding towards, and ignorance of, important female health conditions (Ellis et al.). It could be argued this neglect is rooted in systemic gender bias within healthcare systems, where research and funding allocations have historically been decided by men, with little motivation to prioritise female-specific conditions. This is by no means an assault against man, but merely an important recognition of the absence of women in the pursuit of medical knowledge – something that needs to be addressed with the changing times.
Why the lack? The Historical Neglect of Women’s Health
The argument that women’s health has been historically neglected is widely grounded in evidence. Before 1993, women were rarely included in clinical trials and, still today, healthcare systems know very little about how well medications and treatments work for women. This phenomenon is the product of a historically patriarchal society that traditionally viewed men’s bodies as the ‘norm’, perpetuating the narrative that women were biologically inferior to men, and prone to illness emanating from their reproductive systems (Hudson, 2022). As a result, women have largely been excluded from medical research, exacerbated further by ongoing challenges in recruiting and retaining women in clinical trials (University of Utah Health, 2025).
The absence of women in clinical trials can be traced back, most notably, to the 1970s with the tragic case of thalidomide, which saw thousands of women giving birth to children with defects, sometimes fatally so. The ‘shadows of thalidomide’ directly led to the exclusion of women from clinical trials as a protective measure (Waggoner and Lyerly, 2022), with the Food and Drug Administration (FDA) even going so far as to create a policy excluding women of reproductive potential from Phase 1 and 2 of all clinical trials.
Paradoxically, this exclusion has created an absence of sufficient research on the safety and efficacy of drugs in women. This becomes even more alarming when considering that men and women respond differently to certain medications, with one study showing women may be slightly more susceptible to gastrointestinal side-effects from nonsteroidal anti-inflammatory drugs, for example (Sohail et al., 2023). It wasn’t until 2001 that the Institute of Medicine released a report suggesting how sex difference influences biology and therefore should be studied as a variable in clinical research. The nuances and differences of female anatomy have thus only been viewed as a factor when manufacturing effective pharmaceutical drugs and medicines for less than 30 years.
The picture becomes even more stark when factoring in racial or ethnic differences. Indeed, it wasn’t until 2022 that the MRCT Centre identified that historical clinical trial data has not considered the intersection of biological sex and race, indicating an even more significant underrepresentation of women of colour in the design and creation of medicine.
The absence of women in clinical trials becomes even more concerning considering evidence suggesting pain is both more common in women than men, and that women are generally more sensitive to pain. Biology plays a role in pain perception, with evidence suggesting different human pain systems between the two genders, from the functioning of the peripheral sensory nerves, processing in the spinal cord, to interactions between neurological and immunological cells, which account for variance in emotional and cognitive responses to pain (Williams). You might argue this attests for the long-standing prejudice that women are the weaker sex, but women are biologically and physiologically more susceptible to greater pain experiences, whether we like it not. It is not weakness, it is biology, and healthcare systems have systemically failed to account for this reality when addressing female health conditions. Instead, women have been subject to greater diagnostic delays and lack of effective treatments, evidencing what Laughey’s refers to as a significant ‘gender pain gap’ (Laughey et al.).
The perpetuation of this gender pain gap may result from the embedded societal norm that women are more ‘emotional’, with pain being more frequently attributed to psychological causation. This is a stark reality for female-specific conditions, but even for pains that signal serious pathologies such as chest pains, missed or delayed diagnoses are a greater problem in women than in men. Thus, regardless of the issue at hand, women find themselves fighting far greater for validation and recognition of medical conditions, perhaps borne from deeply embedded unconscious bias in society and healthcare systems.
This trend of dismissal and invalidation is a key barrier to health care. When conditions requiring immediate attention are prolonged and treatments are sparce, damage is done – to individuals, families, and the economy. All of this suggests women’s health policy is not just a medical issue, but a socio-economic, political, and ideological one.
What’s the Gap? Policy and Endometriosis
When considering endometriosis funding allocations and subsequent treatment options, it becomes clear that endometriosis as a female health condition supports the theory of the gender pain gap. Gibbons et al., demonstrate how endometriosis has been historically underrepresented in public health discourse and policy agendas, a reflection not only of the stigma associated with ‘period pain’, but also the ‘global gender health gap in medical care’. Tuana (2004) even goes so far as to suggest endometriosis is an example of a ‘missed’ disease, borne from ‘practises of ignorance…oppression and exclusion’.
Perhaps endometriosis is a missed disease. For example, when society began taking mental health conditions more seriously following historical stigmatisation and neglect in policy representation, the WHO developed Project Atlas back in 2000 to track and promote the availability of mental health policies worldwide. Unfortunately, endometriosis remains lagging behind the curve, with no programme to map or track global endometriosis policy development to date, despite increasing recognition and prevalence (Gibbons et al., 2025)
Two landmark Reviews published in 2025 reveal more than a quarter of countries globally lack any publicly available clinical recommendations for endometriosis, only 7% have official government-endorsed clinical care guidelines, and over half have no policy information available at all (Evans, 2025). The lack of health care policies translates into a lack of resources for clinicians and patients, all of which merely exacerbates already existing clinical barriers to accessing endometriosis services (Evans, 2025). Thus, we can conclude that endometriosis has remained largely invisible and ignored in government policy and research funding globally (Hudson 2022).
Hudson explicitly outlines the way in which this policy gap for endometriosis care falls within the narrative of gender bias and medical misogyny, framing the condition as a consequence of ‘undone science’. In other words, the lack of knowledge, understanding, and treatment options for endometriosis is the result of ‘structural, cultural and political processes’ that have engendered the assumption women are somehow accountable for their own illness, and endometriosis as a serious health condition is continuously undermined because of historically dismissive constructions of ‘menstruation’. Endometriosis thus becomes framed through the lens of ‘ignorance studies’, the idea that endometriosis as a female experience has been ‘wilfully ignored’, leading to a lack of understanding of the disease itself. This has given rise to several myths surrounding the disease – the idea that women’s behaviour made them susceptible to developing endometriosis, suggesting this physical disease is rooted in women’s personality behaviours, rather than having an unpreventable, physical cause (Hudson, 2022). Griffiths adds to this, with the assertion that our lack of understanding results from stigma around the discussion of menstruation, sexual intercourse, and childlessness (Griffiths, 2021).
This reality seeps into patient experiences. Studies show women with endometriosis experience delegitimization of their symptoms before, during and following diagnosis. In a UK Parliament Report submitted by Dr Veronique Griffith, it was found that patients report two main negative attitudes towards their presentation of symptoms – that their pain is dismissed as period pain or psychological in origin, and the idea that menstrual pain was normal and not rooted in a physiological dysfunction (Griffith, 2021). Ironically, experiences of this stigma engendered an even greater negative health impact, and the stress borne from battling with healthcare professionals for validation merely worsened endometriosis symptoms (Griffith, 2021).
Endometriosis as a female health condition thus falls victims to the chronic underfunding and under research of female health conditions, largely resulting from historical stigmas associated with female health, the prioritisation of male biology, and the subsequent absence of women in clinical trials. As a result, even in the 21st century, endometriosis remains sparce in global health policies, despite its high prevalence and significant personal, social, and economic burden. This adds credibility to the assertion that endometriosis is a ‘missed disease’, and the result of chosen ignorance when it comes to understanding women’s health.
Looking Ahead – Steps towards Equity
While history suggests endometriosis has been chronically under-funded and under-researched, its appearance in global health policy is increasing, albeit slowly. As society becomes more inclusive and empathetic, women’s health is featuring more in policy discourse, advocacy groups, and social media, paving the way for meaningful reform.
Gibbons et al., identify recent attempts to prioritise endometriosis in political spheres, citing the European Parliament’s promotion of an annual Endometriosis Day back in 2004. This evolved overtime when, in 2017, it urged EU member states to take more meaningful steps towards endometriosis awareness, such as increasing funding for endometriosis research; drafting clinical guidelines; establishing reference centres; and supporting the training of specialised health professionals. Member states were even encouraged to make endometriosis treatment free, and to provide sick leave during acute periods of illness. This is yet to be reflected in policy and, as of 2025, a UK petition to make menstrual leave mandatory for endometriosis sufferers was unfortunately rejected (Montague-Coast, 2025). Nonetheless, the fact that these conversations are being shared is positive and already reflects a shift away from historical stigma around women’s health.
Several countries are leading the way for reform more so than others. Work is being done in France to replace laparoscopic diagnostic surgery with what they have described as the ‘Endotest’, supposedly enabling all forms of endometriosis to be detected by means of a simple saliva analysis. This, if legitimate and effective, represents an unprecedented scientific advance in the world of diagnostics, and even has the potential to extend to other pathologies such as ovarian cancer and neurological diseases (slim, 2025).
Similarly, as of 2025, Poland’s Minister for Health has issued a new regulation introducing a free nationwide model for diagnosis and treatment because of years of advocacy by the civic organisation ‘Conquer Endometriosis’. This national system for treating endometriosis offers women free, holistic care, including consultations with a range of specialists (surgeons and psychologists alike) and a combination of imaging diagnostics and pharmacological/surgical treatments. Their National Health Fund (NFZ) also offers support from dietitians and physiotherapists, evidencing the holistic approach to endometriosis care that is so often overlooked and lacking (Angouridi, 2025).
While Poland and France clearly represent an increasing appetite to improve endometriosis care, Australia is often cited as the world leader ahead of the curve. In 2018, Australia was the first country to lead a National Action Plan for Endometriosis (NAPE) and has since made significant research investments beyond $50 million. The latter has since been translated into the establishment of the Ainsworth Endometriosis Research Centre at UNSW, further integration of Endometriosis and Pelvic Pain Clinics, and the development of diagnostic tools such as PIPPA (The Lancet Regional Health – Western Pacific, 2025). Despite this, a 2025 survey from Women’s Health Matters found around half of women surveyed reported being ‘dissatisfied’ or ‘very dissatisfied’ with the level of care on offer, indicating that these ongoing shifts and reforms are simply not enough when it comes to patient’s lived experiences and quality of life (Payne, 2025).
Conclusion
Awareness of endometriosis is rising, driven by advocacy groups, campaigners, researchers, and the growing visibility afforded by social media. Yet historically, endometriosis – and women’s health more broadly – has been ignored, stigmatised, dismissed, and belittled. Despite the far-reaching consequences of living with endometriosis, including not only physical pain but emotional distress, mental ill health, unemployment, and co-existing conditions, the disease has not received funding proportional to its prevalence or burden, particularly when compared with non-gender-specific conditions.
This reflects a wider neglect of women’s health, rooted in a legacy of medical ‘ignorance’ towards female anatomy and physiology, shaped by the systematic exclusion of women from clinical research and a persistent lack of understanding of female-specific conditions. While some countries are beginning to take steps to improve awareness and develop more holistic approaches to endometriosis care, progress remains insufficient. Treatment options are still limited, misogyny and belittlement persist within healthcare settings, and patient experiences continue to fall short of what is needed. Meaningful reform is essential and must be driven by national and global health policy, sustained investment in research, and a deliberate effort to close the long-standing gender pain gap.
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