{"paper_id":"251c4df5-b37a-4381-9e7e-9702396db7b8","body_text":"npj | women's health Comment\nhttps://doi.org/10.1038/s44294-024-00048-6\nUnderstanding endometriosis underfunding\nand its detrimental impact on awareness and\nresearch\nUlrik Bak Kirk, Anne So fie Bank-Mikkelsen, Dorte Rytter, Dorthe Hartwell,\nHenrik Marschall, Mette Nyegaard, Mikkel Seyer-Hansen & Karina Ejgaard Hansen\n Check for updates\nEndometriosis affects approximately 190 million\nwomen globally. Many individuals with\nendometriosis face complex journeys through the\nhealthcare system, set against a backdrop of\nhistorically underfunded research into women ’s\nhealth. This study investigates the funding allocated\nto endometriosis up to 2023 by analysing the top\n100 granting foundations in Denmark and\ncomparing it to diabetes and in flammatory bowel\ndisease, with similar prevalence and impact. We\nfound that endometriosis remains signi ficantly\nunderfunded.\nEndometriosis, a chronic disease defined by the presence of endometrium-\nlike tissue outside the uterus, affe cts approximately 190 million women*\nglobally1. It is associated with a range of often debilitating symptoms,\nincluding severe pelvic pain, bowel and bladder symptoms, fatigue, and risk\nof infertility\n2,3. Despite its high prevalence, diagnosis is delayed on average by\n7–9 years, and this has remained consistent over the past ten years, with\neffective therapy and care frequently falling short4. Research conducted by\nthe Finding Endometriosis using Machine Learning(FEMaLe) Project has\nshed light on the significant underdiagnosis of endometriosis. In Denmark,\nonly up to 2% of women in the reproductive age receive a diagnosis 5,\ncompared to an estimated 10%, despitethat individuals with endometriosis\nuse the Danish healthcare system 19% more often than those without the\ncondition, in the ten years preceding the diagnosis\n6. The consequences of\nthis diagnostic delay are numerous. First, without adequate treatment, the\ndisease may progress, becoming increasingly difficult to manage. Existing\nsymptoms, such as pain, may become chronic, and new symptoms may\ndevelop over time\n2–4. Second, the psychosocial impact of this ‘medical\nmerry-go-round’, as some patients describe it, can significantly reduce the\nquality of life for those with endometriosis. This includes poor mental\nh e a l t h ,a sw e l la sc h a l l e n g e si ni n t e r p e r s o n a lr e l a t i o n s h i p sa n do c c u p a t i o n a l\nsettings\n7,8. Many people with endometriosis face complex journeys to and\nthrough care9, which exist within a broader context of historically under-\nfunded research into women’s health and chronic pain 10. A recent study\ndocumented the signi ficant underinvestment in endometriosis research\nprojects across the European Union ’s framework programmes, where a\nstaggering low 27 out of 145,983 projects funded in total (0.02%) were found\nto be related to endometriosis11.T h i sl a c ko ffinancial support perpetuates a\ncycle of knowledge gaps and limited aw areness, contributing to delayed\ndiagnosis and inadequate treatment options for those affected. In this article,\nwe will explore the multifaceted rami fications of underfunding in endo-\nmetriosis research, comparing it to diseases with similar prevalence and\nimpact, namely diabetes and inflammatory bowel disease\n12,13. We will dis-\ncuss its detrimental effects on awareness and scienti fic advancements,\nhighlighting the urgent need for increased investment in innovative tools\nand methods to propel research and innovation forward.\nComorbidities, costs, and consequences: the underfunding\ndilemma\nSystematic reviews and meta-analyses have shown that women with\nendometriosis have higher rates of co-occurrence of gastrointestinal diseases\n(such as irritable bowel syndrome and in flammatory bowel disease,\nimmunological diseases (such as rheumatoid arthritis and psoriasis), and\ncardiovascular diseases (such as coron ary heart disease, hypercholester-\nolemia, and hypertension) compared to women without endometriosis\n10,14.\nThe estimated annual cost of endometriosis per affected woman is€9500,\nattributed to loss of productivity and direct healthcare costs. This is similar\nto the costs associated with diabetes and Crohn’sd i s e a s e\n15,16.T h eN a t i o n a l\nInstitutes of Health (NIH), the largest source of biomedical research funding\nglobally, allocates nearly $48 billionUSD annually to the study of various\ndiseases and conditions\n17. In 2022, the total US funding for endometriosis\nwas $16 million (0.038%), which translates to $2.00 per patient per year. By\ncomparison, 12% of US women are expected to suffer from diabetes in their\nlifetime. Assuming that half of the diabetes research budget will be allocated\nto female patients, this results in $31.30 per woman per year. Similarly,\nCrohn’s disease impacts over 690,000 people in the US. In 2022, Crohn ’s\ndisease research received $90 milli on in funding, which is $130.07 per\npatient, over 65 times more per pa tient than for endometriosis\n18.T h i s\nillustrates that despite its significant disease burden, endometriosis receives\ndisproportionately less research funding compared to other chronic con-\nditions with similar high prevalence and impact 19,s u c ha sd i a b e t e sa n d\ninflammatory bowel disease. The esti mated socioeconomic burden of\nendometriosis has been criticised fo r potentially being too conservative,\nmeaning that the true disparity between disease burden and funding could\nbe even greater\n20.\nImpact on awareness\nInvestments in public health awarenesscampaigns, educational initiatives,\nand menstrual health literacy programs are crucial for dispelling myths,\nreducing stigma, and empowering individuals to seek timely medical\nattention. However, the absence offinancial support for awareness raising\nnpj Women's Health |            (2024) 2:45 1\n1234567890():,;\n1234567890():,;\n\nactivities contributes to a pervasive lack of understanding and recognition of\nendometriosis among the general population, healthcare professionals, and\npolicy-makers alike21. Moreover, many individuals with endometriosis\nexperience delays in diagnosis due tothe normalisation of menstrual pain\nand the dismissal of their symptoms as ‘routine’ discomfort22.T h es t i g m a\nand taboo surrounding menstruation andreproductive health perpetuates a\nculture of silence and shame, hindering open dialogue about\nendometriosis23. Ultimately, current knowledge and research merely\nunderlines how underfunding is re flecting a broader societal attitude\ntowards women’s health issues and menstrual disorders, maintaining a cycle\nof neglect and marginalisation. To explore the current state of awareness in\nDenmark, we have searchedInfomedia, a media intelligence powerhouse in\nthe Nordics, to assess endometriosis’ media coverage compared to diabetes\nand inflammatory bowel disease in Denmark from 1992 to 2023. We found\nthat‘diabetes’ has been mentioned almost 77 times more often (n = 201,255)\nthan ‘endometriosis’ (n = 2621), whereas ‘inflammatory bowel disease ’,\nincluding‘Crohn’s’ and ‘colitis ulcerosa’, has been featured almost twice as\nmuch ( n = 4384). By raising awareness of endometriosis as a legitimate\nmedical condition deserving attention and resources, we can facilitate earlier\ndiagnosis, improve treatment outcomes, and ultimately alleviate the burden\nof disease for millions worldwide\n1,24.\nExploring endometriosis funding in Denmark\nWe have assessed the top 100 grant-awarding foundations in Denmark25 to\ncompare their support in (research) pr ojects on endometriosis, diabetes\n(mellitus type 1 and 2), and inflammatory bowel disease until 2023. In total,\n9 foundations have supported one or more of the three conditions illustrated\nby fed back data or published information about grant awards, as shown in\nFig. 1. Our Danish investigation demo nstrates that when comparing the\ntotal grant-awarded endometriosis research projects (173,958 EUR) with\nFig. 1 | Flowchart of Danish foundation grants for\ndiabetes, inflammatory bowel disease, and endo-\nmetriosis. This figure presents the funding dis-\ntribution from the top 100 grant-awarding\nfoundations in Denmark, supporting research pro-\njects on endometriosis, diabetes (mellitus type 1 and\n2), and in flammatory bowel disease until 2023. Of\nthese foundations, only nine have provided support\nfor one or more of the three conditions, as illu-\nstrated. Our analysis reveals a signi ficant funding\ndisparity, with endometriosis research receiving\n173,958 EUR in grants compared to 254,908,430\nEUR for diabetes and 325,940 EUR for in flamma-\ntory bowel disease. These findings underscore the\nunderfunding of endometriosis research relative to\nother chronic conditions.\nnpj | women's health Comment\nnpj Women's Health |            (2024) 2:45 2\n\nthose on diabetes (254,908,430 EUR) and in flammatory bowel disease\n(325,940 EUR), endometriosis remains severely underfunded.\nHindrance to research advancements\nEndometriosis research faces signi ficant barriers due to chronic under-\nfunding, limiting the scope and depth of scientific inquiry into the disease’s\nunderlying mechanisms and potential therapeutic interventions. More basic\nresearch into the pathophysiology of endometriosis is essential for eluci-\ndating the complex interplay of genetic, hormonal, and environmental\nfactors contributing to disease development and progression\n26. However,\nlimited funding impedes researchers’ ability to conduct large-scale epide-\nmiological studies, genetic analyses, molecular and mechanistic investiga-\ntions necessary for advancing our u nderstanding of the condition.\nMoreover, the severe lack of financial support for international and inter-\ndisciplinary research collaborations,such as the FEMaLe Project, hampers\nprogress towards developing targeted therapies and personalised treatment\nstrategies for endometriosis. Without adequate resources, researchers\nstruggle to translate scientific discoveries into clinical applications, thereby\nincreasing the knowledge gap between benchtop research and bedside care.\nInvestment in endometriosis research is not only essential for improving\npatient outcomes but also holds promisefor uncovering insights into related\nconditions such as infertility, pelvic pain disorders, and certain types of\ncancer\n10,24. By prioritising funding for endometriosis research, policymakers\nand funding agencies can catalyse cutting-edge scienti fic advancements,\ndrive innovation, and ultimately impro v et h el i v e so fm i l l i o n sa f f e c t e db y\nthis complex and often debilitating condition21,26.\nThe urgent need for increased investment\nAddressing the significant underfunding of endometriosis requires a con-\ncerted effort from policymakers, funding agencies, and advocacy organi-\nsations. Investing in endometriosis research and awareness initiatives is not\nonly a matter of scientific priority but also a question of social justice and\ngender equity. Women disproportio nately bear the burden of endome-\ntriosis, yet their healthcare needs remain chronically underfunded and\noverlooked\n19,20. By prioritising investment in women ’s health research,\npolicymakers can advance gender equity in healthcare and address long-\nstanding disparities in funding and resource allocation 11,18,19.M o r e o v e r ,\nincreased investment in endometriosis research has the potential to yield\nsignificant economic and societal benefits8,15,16. By improving diagnosis and\ntreatment outcomes, we can reduce hea lthcare costs associated with the\nmanagement of endometriosis-related complications and comorbidities.\nInvesting in innovative research approaches and digital health development\ncan also stimulate scientific innovation, foster academic collaboration, and\nstrengthen the competitiveness of research institutions\n24.\nConclusion\nIn this article, we investigated the funding of endometriosis compared to\nirritable bowel syndrome and diabetes in a Danish setting, similar to a\nprevious comparison conducted in the US\n18.T h es i g n ificant underfunding\nof endometriosis perpetuates a cycle of knowledge gaps, suffering, and\nmissed opportunities for scientific advancement. To address this urgent\nissue, we must prioritise endometrio sis research and advocacy efforts,\nallocating resources commensurate with the disease ’s prevalence and\nimpact. By raising awareness, fostering interdisciplinary collaboration, and\ninvesting in innovative research initiatives, we can pave the way for a\nbrighter future for those affected by endometriosis. It is time to recognise\nendometriosis as a global health priority and take decisive action to drive\npositive change. Only through collective effort and investment can we\nunravel the enigma of endometriosis and improve the lives of millions\nworldwide.\nData availability\nNo datasets were generated or analysed during the current study.\nUlrik Bak Kirk1,5 ,A n n eS ofie Bank-Mikkelsen1,5,D o r t eR y t t e r1,\nDorthe Hartwell2,H e n r i kM a r s c h a l l1, Mette Nyegaard3,M i k k e lS e y e r -\nHansen4 & Karina Ejgaard Hansen1\n1Department of Public Health, Aarhus University, Aarhus, Denmark.\n2Department of Gynaecology, Fertility and Obstetrics, Copenhagen\nUniversity Hospital, Copenhagen, Denmark. 3Department of Health\nScience and Technology, Aalborg University, Aalborg, Denmark.\n4Department of Gynecology and Obstetrics, Aarhus University Hospital,\nAarhus, Denmark. 5These authors contributed equally: Ulrik Bak Kirk, Anne\nSofie Bank-Mikkelsen. e-mail: ubk@ph.au.dk\nReceived: 20 September 2024; Accepted: 17 December 2024;\nReferences\n1. World Health Organization (WHO). Endometriosis. Fact sheets. https://www.who.int/news-\nroom/fact-sheets/detail/endometriosis (2023).\n2. Zondervan, K. T., Becker, C. M. & Missmer, S. A. Endometriosis. N. Engl. J. Med. 382,\n1244–1256 (2020).\n3. Horne, A. W. & Missmer, S. A. Pathophysiology, diagnosis & management of endometriosis.\nBMJ 379, e070750 (2022).\n4. Saunders, P. T. K. & Horne, A. W. Endometriosis: Etiology, pathobiology, and therapeutic\nprospects. Cell 184, 2807–2824 (2021).\n5. Illum, L. R. H. et al. Temporal and regional differences in the incidence of hospital-diagnosed\nendometriosis: a Danish population-based study. Acta Obstet. Gynecol. Scand. 101, 737–746\n(2022).\n6. Melgaard, A. et al. Utilization of healthcare prior to endometriosis diagnosis: a Danish case-\ncontrol study. Hum. Reprod. 38, 1910–1917 (2023).\n7. Hansen, K. E. et al. Psychological interventions improve quality of life despite persistent pain in\nendometriosis: results of a 3-armed randomized controlled trial. Qual. 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Women ’s health: tackle the research funding de ficit. Nature 619, 252\n(2023).\n21. Giudice, L. C., Horne, A. W. & Missmer, S. A. Time for global health policy and research leaders\nto prioritize endometriosis. Nat. Commun. 14, 8028 (2023).\n22. Tomlinson, M. K. Moody and monstrous menstruators: the Semiotics of the menstrual meme on\nsocial media. Soc Sem 31, 421–439 (2021).\n23. Stanek, D. B. et al. Not ‘just a bad period ’— The impact of a co-created endometriosis social\nmedia health campaign: a mixed methods study. Front. Commun. 8, 1154297 (2023).\nnpj | women's health Comment\nnpj Women's Health |            (2024) 2:45 3\n\n24. Watson, C. Surge in endometriosis research after decades of underfunding could herald new\nera for women’s health. Nat. Med. 30, 315–318 (2024).\n25. Knowledge Centre for Foundations in Denmark. Overview of the 100 most grant-awarding\nfoundations https://fondenesvidenscenter.dk/fonde-i-tal/oversigt-over-de-100-mest-\nbevilgende-fonde/ (2023).\n26. Rahmioglu, N. et al. The genetic basis of endometriosis and comorbidity with other pain and\ninflammatory conditions. Nat. Genet. 55, 423–436 (2023).\nAcknowledgements\nFEMaLe Project has received funding from the European Union's Horizon 2020 research and\ninnovation program (ID: 101017562). The funders had no role in study design, data collection and\nanalysis, decision to publish, or preparation of the manuscript.\nAuthor contributions\nU.K. generated the initial idea, design, and methodology, performed the analyses, wrote thefirst draft\nof the paper, and reviewed the manuscript drafts. A.M. contributed to the initial idea, design, and\nmethodology, reached out to the foundations, performed the analyses, and reviewed the manuscript\ndrafts. D.R., D.H., H.M., M.N. and M.H. reviewed the manuscript drafts. K.H. contributed to the initial\nidea and reviewed the manuscript drafts. All authors have read and agreed to the published version of\nthe manuscript.\nCompeting interests\nThe authors declare no competing interests.\nAdditional information\nCorrespondence and requests for materials should be addressed to Ulrik Bak Kirk.\nReprints and permissions informationis available at\nhttp://www.nature.com/reprints\nPublisher’sn o t eSpringer Nature remains neutral with regard to jurisdictional claims in published maps\nand institutional affiliations.\nOpen Access This article is licensed under a Creative Commons Attribution-NonCommercial-\nNoDerivatives 4.0 International License, which permits any non-commercial use, sharing,\ndistribution and reproduction in any medium or format, as long as you give appropriate credit to the\noriginal author(s) and the source, provide a link to the Creative Commons licence, and indicate if you\nmodified the licensed material. 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