Endometriosis and Disability: Analysis of Federal Court Appeals of Social Security Disability Insurance and Supplemental Security Income Claims by Individuals Suffering From Endometriosis

To evaluate the federal appeals cases, we examined published court opinions for quantitative data to describe the cases and qualitative data to analyze the approaches and rationales of the appeals courts. Typical of legal citation, the plaintiffs’ last names are included in the case names. Although their names are publicly published, we masked the plaintiffs’ names with an alphabetical de-identifier in the text and references. We refrained from listing the plaintiffs’ names next to information about their conditions or treatment. The remainder of the court citation remains intact. We consulted a law librarian to develop a search strategy and terms. The first author searched online legal databases, Westlaw and Nexis Uni, using a combination of “social security disability” and “endometriosis.” All records available through January 24, 2021, were included. No time or geographic limitations were applied. The only filter restricted results to federal cases—removing any state cases. Search results were downloaded into Excel files, compiled, and de-duplicated. Inclusion criteria were 1) federal appeal (U.S. District or Circuit courts) of administrative decisions of SSDI and/or SSI claims with endometriosis in the list of claimed impairments; and (2) court opinion addressed an endometriosis-related issue (e.g., evidence supporting an endometriosis diagnosis, credibility of the claimant/plaintiff’s testimony concerning own symptoms). Exclusion criteria were 1) claims that included endometriosis as an impairment but the issue of appeal was not endometriosis-related (e.g., court decision addressed a musculoskeletal impairment); 2) claimed impairments secondary to endometriosis with unspecified or unrelated injuries (e.g., pelvic pain, complications from endometriosis surgery); and 3) lawsuits or disability claims via other mechanisms that follow different processes, laws, and standards of review (e.g., U.S. Court of Appeals for Veterans Claims, Employee Retirement Income Security Act, Americans with Disabilities Act, Disabled Child’s Insurance Benefits). Using these criteria, two reviewers independently considered the full text of each case for inclusion or exclusion. They recorded decisions and met to discuss and resolve conflicts. The resulting cases constituted the sample for data extraction. The Framework Analysis procedure guided development of the data extraction tool. The Framework Analysis followed the recommended stages of 1) familiarization with the data, 2) developing and applying an analytical framework, 3) charting the data in the framework matrix, and 4) synthesizing and interpreting data ( Gale et al., 2013 ; Srivastava & Thomson, 2008 ).Consistent with Framework Analysis guidelines, the stages were iterative and ongoing, occurred simultaneously, and allowed for further refinement of the data extraction protocol. After reading cases to familiarize themselves with the data, the authors developed an analytic framework (grounded in the existing framework of laws, regulations, and case law) and structured matrix to guide data extraction. The framework matrix consisted of cells in which researchers recorded summarized data according to codes (columns) and cases (rows) ( Gale et al., 2013 ). Extracted codes included process data from the claims (e.g., SSDI and/or SSI claims, filing and decision dates, impairments claimed), administrative and court decisions (e.g., severe impairment decision, appeal decision), and legal arguments or rationales (e.g., appeal basis, court rationale). The team extracted data for five cases, compared results, and refined the tool. Two independent reviewers then charted data in the framework matrix by extracting data for each case. Conflicts most often related to standards applied by the courts, factors considered, and rationales. The differences were readily resolved through discussion, which contributed to further clarification of extraction guidelines. We applied Framework Analysis to the appeals courts’ decisions and rationales addressing endometriosis-related issues (e.g., diagnosis, evidence, testimony, physician opinion) as the foundation from which to understand the courts’ approaches and decisions ( Gale et al., 2013 ). Framework Analysis was appropriate because 1) it can be used by multiple disciplines; 2) it allows for deductive and inductive approaches; and 3) it can be applied to varied sources of data ( Gale et al., 2013 ). We extracted quantitative data (see list of variables in Table 1 ) to provide context about the cases and their timelines. If days of the month were not reported, day 15 was imputed (e.g., January 2001 extracted as January 15, 2001). We calculated years between the reported disability start date, the claim filing, and the court’s decision, and reported means and standard deviations for time from 1) beginning of disability to date claim filed, and 2) date claim filed to appeals court decisions. When multiple dates were reported (e.g., multiple filings, amended times, SSDI and SSI claims filed at different times), the earliest date was extracted. Two independent researchers extracted qualitative data from the courts’ discussions regarding rationales and decisions about endometriosis-related issues of appeal. They recorded the summarized data according to predetermined codes in the framework matrix and met to discuss and resolve conflicts. In subsequent summary and analysis of the qualitative data, we examined individual codes and groups of codes across cases to identify and describe overarching themes. Although the emerging themes overlapped with legal elements of the case, the focus of the themes remained on the courts’ approach, language, emphasis, and choices.

Of the 720 unique records, 87 met criteria for inclusion ( Figure 2 ). Individuals can file and appeal their claims more than once and can appeal their cases to District and Circuit courts if they do not agree with decisions. As a result, 87 cases represented 82 unique individuals, as five claimants/plaintiffs had more than one appeal that met inclusion criteria. Cases in the final sample dated between 1992 and 2020. As shown in Table 1 , about half of the 87 cases were joint SSDI/SSI claims (49%). Fewer were SSDI-only (37%) or SSI-only claims (14%). The mean times between the claimed disability start date and filing date was 3.1 years, and the mean time between the claim filing date and appeals court decision date was 5.1 years. Counsel represented most claimants/plaintiffs in the disability review process. All cases were District court appeals. The administrative review had ruled endometriosis a severe impairment (five-step disability review, Figure 1 ) in about half of included claims, but the appeals courts ruled in favor (in part or in full) for the claimant/plaintiff in fewer than half of the appeals, indicating the decision was reversed and partly or fully remanded for further consideration. Three themes emerged in the courts’ endometriosis-related decisions: evidence, treatment, and time ( Table 2 ). These themes and their sub-themes are discussed below. Courts did not review evidence to re-adjudicate the issue of disability and instead considered whether there was “substantial evidence” to support the ALJ’s findings ( Evidence, Procedure, and Certification for Payments: Judicial Review, 2022 ). Courts concentrated on medical evidence, diagnosis, and the credibility of testimony as related to endometriosis impairments. Court decisions hinged on medical evidence, requiring “medical signs and findings established by medically acceptable clinical or laboratory diagnostic techniques” ( Disability Insurance Benefit Payments, 2022 ). Courts heavily emphasized extensive medical encounters including diagnostic tests, surgeries, and physician visits over time ( Plaintiff AN v. Commissioner of Social Security, 2020 ; Plaintiff AY v. Saul, 2020 ). Courts looked for evidence to directly link 1) symptoms with the claimed impairment ( Plaintiff W v. Commissioner of Social Security, 2000 ) and 2) symptoms or impairment with functional limitation ( Plaintiff T v. Commissioner of Social Security, 2017 ; Plaintiff W v. Commissioner of Social Security, 2001 ; Plaintiff AG v.Commissioner of Social Security Administration, 2013 ; Plaintiff AP v. Astrue, 2007 ; Plaintiff AS v. Colvin, 2013 ; Plaintiff BF v. Saul, 2020 ). The courts expected testimony—lay or professional—of symptoms and linked functional limitations to be supported by medical evidence as demonstrated in the following examples. Courts indicated the claimants/plaintiffs’ testimonies of subjective symptoms alone were inadequate without supporting medical evidence of treatment or functional limitation ( Plaintiff A v. Colvin, 2015 ; Plaintiff H v. Commissioner of Social Security, 2014 ; Plaintiff AC v. Barnhart, 2005 ). Although treating physicians’ testimonies carry great weight, courts expected them to support their opinions with evidence. ALJs and/or courts criticized treating physicians’ testimonies for not providing explanation or supporting evidence for their opinions ( Plaintiff C v. Astrue, 2012 ; Plaintiff AI v. Astrue, 2012 ; Plaintiff AL v. Commissioner of Social Security, 2011 ; Plaintiff AM v. Astrue, 2009 ). Inversely, the courts overturned the ALJs’ opinions when they did not consider the treating physician’s opinion in light of the complete medical record ( Plaintiff AY v. Saul, 2020 ). The courts and ALJs repeatedly emphasized consistency across testimony and medical evidence. Claimants/plaintiffs’ testimony was expected to be consistent, as assessed by the ALJs or courts, with medical evidence ( Plaintiff W v. Commissioner of Social Security, 2000 ; Plaintiff AV v. Astrue, 2009 ), and all testimony and medical evidence must match when speaking to the claimants/plaintiffs’ function ( Plaintiff V v. Colvin, 2013 ). Conflicts arose between claimant/plaintiff testimony and treating physician’s notes, between treating physician’s testimony and their own notes, and between physicians. The most common conflicts came from selected phrases from providers’ notes indicating the patient “looks well” or was in “no acute distress” ( Plaintiff D v. Colvin, 2015 ; Plaintiff E v. Astrue, 2011 ; Plaintiff S v. Colvin, 2014 ). No further explanation was given as to the meaning or context of these phrases or to what they referred. This existed across provider specialties. For example, surgeons’ notes or postoperative assessments were sometimes optimistically interpreted to mean the endometriosis was successfully treated, which conflicted with claimants/plaintiffs’ or treating physicians’ testimony concerning symptoms ( Plaintiff E v. Astrue, 2011 ; Plaintiff AT v. Berryhill, 2017 ). In one case, the court chastised the ALJ for assuming that positive surgical outcomes automatically relieved symptoms ( Plaintiff AT v. Berryhill, 2017 ). Claimants/plaintiffs struggled to meet the medical evidence requirement in the face of conflicting test results/diagnoses and financial limitations. In two cases, medical records indicated normal results for diagnostic tests and physical exams, although surgery later revealed endometriosis ( Plaintiff W v. Commissioner of Social Security, 2000 ; Plaintiff AH v. Commissioner of Social Security, 2014 ). Also, limited finances or insurance coverage were raised in three cases as limiting claimants/plaintiffs’ ability to provide adequate medical evidence of their condition or pursue treatments ( Plaintiff G v. Astrue, 2009 ; Plaintiff AC v. Barnhart, 2005 ; Plaintiff AI v. Astrue, 2012 ). The courts repeatedly raised the issue of evidentiary support of diagnosis. Although objective medical evidence was preferred, diagnosis evidence proved complicated and subject to contradiction. For some cases, ALJs and courts were critical of diagnoses based solely on patient-reported symptoms and experiences ( Plaintiff K v. Astrue, 2011 ; Plaintiff AQ v. Astrue, 2008 ). Furthermore, a diagnosis without surgical confirmation could be easily contradicted by imaging tests with “normal” results or “no related abnormalities” ( Plaintiff U v. Colvin, 2014 ; Plaintiff AM v. Astrue, 2009 ). Some decisions recognized official diagnosis required surgery ( Plaintiff BG v. Commissioner of Social Security Administration, 2020 ). The courts considered the credibility of evidence when weighing testimony and medical evidence. Credibility assessments, guided by case law, were most frequently addressed when reviewing testimony by the claimant/plaintiff or health care professionals. Witness testimony earned a label of inconsistent or not credible if it did not align with the administrative or courts’ assessments of medical evidence. The courts found the claimants/plaintiffs’ report of disabling symptoms unpersuasive or unreliable when compared with providers’ notes indicating the claimant/plaintiff exercised ( Plaintiff B v. Berryhill, 2020 ), had normal physical exams ( Plaintiff S v. Colvin, 2014 ), was “not in distress” ( Plaintiff S v. Colvin, 2014 ), or had varying pain scores in light of functional abilities ( Plaintiff X v. Colvin, 2014 ). In general, ALJs and the courts described claimants/plaintiffs’ testimonies as inconsistent in light of the entire medical record ( Plaintiff AL v. Commissioner of Social Security, 2011 ; Plaintiff AM v. Astrue, 2009 ). The ALJs and courts sometimes considered the severity of the surgically diagnosed endometriosis (e.g., stage I) inconsistent with the reported pain severity ( Plaintiff AX v. Berryhill, 2017 ). At times, courts viewed recommendations for conservative treatments, such as hormone therapy instead of a hysterectomy, as indicating lower symptom severity than claimed ( Plaintiff B v. Berryhill, 2020 ; Plaintiff P v. Commissioner of Social Security Administration, 2019 ; Plaintiff AX v. Berryhill, 2017 ). The ALJs or courts disregarded claims of symptom severity as not credible when they perceived the claimant/plaintiff as responding to treatment, cured, or able to manage symptoms ( Plaintiff E v. Astrue, 2011 ; Plaintiff AB v. Astrue, 2013 ; Plaintiff AG v. Commissioner of Social Security Administration, 2013 ; Plaintiff AP v. Astrue, 2007 ; Plaintiff AU v. Commissioner of Social Security, 2001a ; Plaintiff AW v. Commissioner of Social Security Administration, 2017 ; Plaintiff AX v. Berryhill, 2017 ). They considered the credibility of the claimants/ plaintiffs’ testimonies weakened by gaps in treatment history ( Plaintiff AX v. Berryhill, 2017 ), delayed pursuit of treatment ( Plaintiff BD v. Astrue, 2010 ), forgoing medical treatment (e.g., refusing birth control, surgery, or pain referral) ( Plaintiff P v.Commissioner of Social Security Administration, 2019 ; Plaintiff AU v. Commissioner of Social Security, 2001a ), or a pause in complaints after a hysterectomy ( Plaintiff AK v. Saul, 2019 ). For example, the ALJ and court viewed one person’s choice to have children and refuse birth control (i.e., medical treatment) as contradictory to their symptom testimony. One court concurred with the ALJ, relating the following: He [the ALJ] noted that, despite the beneficial effect of birth control medications on her gynecological symptoms, plaintiff voluntarily suspended her use of birth control in order to enhance her prospects of becoming pregnant. The ALJ reasonably determined that plaintiff’s election to forego a beneficial medication, and to bear and rear another child, was inconsistent with her claims of totally disabling pain ( Plaintiff AU v. Commissioner of Social Security, 2001a , p. 19). Although this theme overlaps with topics discussed in evidence (e.g., medical evidence, credibility) and time, issues addressed here focused specifically on treatment. Within this theme, sub-themes emerged including response to treatment, course of treatment, hysterectomy, and prescription pain medications. Positive responses to endometriosis treatment were offered as arguments against the presence of a severe impairment, a duration requirement for having the condition, residual functional capacity, or disability analysis. Symptom relief with medications or surgery, perceived as successful treatment, undercut disability status for endometriosis impairments ( Plaintiff E v. Astrue, 2011 ; Plaintiff F v. Astrue, 2008 ; Plaintiff F v. Astrue, 2010 ; Plaintiff I v. Commissioner of Social Security, 2015 ; Plaintiff M v. Berryhill, 2017 ; Plaintiff N v. Saul, 2020 ; Plaintiff R v. Commissioner of Social Security, 2011 ; Plaintiff AE v. Berryhill, 2018 ; Plaintiff AF v. Commissioner of Social Security, 2016 ; Plaintiff AJ v. Berryhill, 2019 ; Plaintiff AO v. Astrue, 2009 ; Plaintiff AP v. Astrue, 2007 ; Plaintiff AQ v. Astrue, 2008 ; Plaintiff BC v. Colvin, 2014 ; Plaintiff BE v. Saul, 2020 ). However, courts also pointed out cases in which claimants/plaintiffs continued to experience symptoms despite treatment ( Plaintiff L v. Berryhill, 2019 ; Plaintiff AR v. Commissioner of Social Security, 2009 ; Plaintiff AZ v. Astrue, 2012 ). This usually occurred in cases in which the courts disagreed with the ALJs’ decisions. The courts emphasized claimants/plaintiffs having regular and continuous treatment courses during the claimed period of disability ( Plaintiff O v. Colvin, 2014 ; Plaintiff AN v. Commissioner of Social Security, 2020 ). However, continuous treatment might not be enough. In one case, a claimant/plaintiff had continuous treatment through the period of claimed disability, but the ALJ highlighted that her treatment was only medication that had not been recently changed in type or dosage ( Plaintiff AS v. Colvin, 2013 ). Inversely, gaps in treatment course or pauses in pursuing treatment were barriers to successful disability claims ( Plaintiff AK v. Saul, 2019 ; Plaintiff AQ v. Astrue, 2008 ). Courts often viewed hysterectomies as cures for endometriosis. An ALJ ruled a treating physician’s opinions “transitional” in light of a pending hysterectomy ( Plaintiff AI v. Astrue, 2012 ). In reflecting on the extended length of a case, the court said, “the endometriosis could possibly have been eliminated completely if plaintiff had a total hysterectomy” ( Plaintiff G v. Astrue, 2009 , p. 7). A claimant/plaintiff refused a hysterectomy, drawing a negative decision from the ALJ, though the court did not agree ( Plaintiff AR v. Commissioner of Social Security, 2009 ). Regardless, four cases pointed out that claimants/plaintiffs continued to experience symptoms after hysterectomy ( Plaintiff H v. Commissioner of Social Security, 2017 ; Plaintiff L v. Berryhill, 2019 ; Plaintiff V v. Colvin, 2013 ; Plaintiff Y v. Astrue, 2010 ). The courts saw prescription pain medications, or lack of, as an indication of pain severity ( Plaintiff BB v. Apfel, 1999 ). Over-the-counter or nonprescription pain medications were seen as conservative—potentially contradicting a claimant/plaintiff’s reports of pain and weakening the disability claim ( Plaintiff AM v. Astrue, 2009 ). Courts considered duration of symptoms and their cyclic or continuous nature when weighing the impacts of the impairments. They also looked to estimates of missed work time when contemplating claimants/plaintiffs’ functional abilities. When weighing the impact of a severe impairment’s symptoms, courts frequently deliberated on 1) duration and 2) continuity. Symptoms that did not last for a continuous 12 months were fatal to disability claims ( Plaintiff F v. Astrue, 2008 ; Plaintiff F v. Astrue, 2010 ; Plaintiff M v. Berryhill, 2017 ; Plaintiff BF v. Saul, 2020 ). Response to treatment or “successful treatment” (labeled by the ALJs or courts) was the most common way the 12month period was interrupted (see Response to Treatment). In addition, gaps in treatment were examined as interruptions to the time element (see Course of Treatment). Although the law requires the disability to be continuous, one case explained that this does not mean individuals must be bedridden every day all day ( Plaintiff Q v. Berryhill, 2019 ). The ability to function on some level does not destroy the disability claim. This balance became a central focus of some claims. The cyclic nature of menstruation and endometriosis symptoms, for some, was a repeated issue. Even if symptoms were described as severe, the claim was viewed as weaker if the ALJ or courts assessed the symptoms as “intermittent” ( Plaintiff AU v. Commissioner of Social Security, 2001b ). To establish that endometriosis interrupted function, the claimant/plaintiff or their treating physician would estimate the amount of work missed per week or month due to impairments. This estimate supported the “inability to engage in any substantial gainful activity” element of disability claims (see introductory text), but the ALJs and courts expected supporting evidence consistent with the medical record and other testimony. Courts reviewed estimates of missed work time caused by pelvic pain or endometriosis-related symptoms ( Plaintiff C v. Astrue, 2012 ; Plaintiff J v. Commissioner of Social Security, 2018 ; Plaintiff O v. Colvin, 2014 ; Plaintiff Z v. Colvin, 2014 ; Plaintiff AA v. Saul, 2020 ; Plaintiff AD v. Commissioner of Social Security, 2018 ; Plaintiff AI v. Astrue, 2012 ; Plaintiff AS v. Colvin, 2013 ).

Analysis of U.S. federal appeals decisions of SSDI and SSI claims revealed three themes—evidence, treatment, and time—commonly raised by courts in endometriosis-related issues of appeal. The emerging themes overlapped with legal elements of the case, but the focus of this analysis remained on the courts’ emphasis and rationales concerning endometriosis-related claims. Court approaches across the three themes exposed the systematic difficulties of making endometriosis-based claims. The methodology we used provided unique insights into endometriosis-related disability claims and can be applied to other claimed impairments. Evidence is key to every claim but proves challenging with chronic pain conditions, like endometriosis, that are difficult to diagnose and subject to complex factors. Pathways to endometriosis diagnosis, particularly the time from symptom onset to first help-seeking, are subject to significant delays facilitated by patient-related factors such as symptom normalization ( Ballard et al., 2006 ; Culley et al., 2013 ; Denny, 2004 ; Young et al., 2015 ), age at the time of first symptoms ( Greene et al., 2009 ; Soliman, Fuldeore, et al., 2017 ), and uncertainty ( Culley et al., 2013 ); social factors such as influence of family/friends on symptom assessment ( Ballard et al., 2006 ; Culley et al., 2013 ; Denny, 2004 ) and stigma ( Seear, 2009 ); and health care system– related factors such as dismissal of symptoms by providers ( Ballard et al., 2006 ; Denny, 2004 ) and specialty of provider consulted ( Greene et al., 2009 ; Soliman, Fuldeore, et al., 2017 ). The same time period in which patients (possible future claimants/plaintiffs) grapple with symptom recognition, symptom assessment, and navigating health systems will later constitute the evidentiary foundation of their disability claims. Factors commonly contributing to diagnostic delay in endometriosis can muddy the waters for future claims. Health care providers can make presumptive endometriosis diagnoses based on imaging, physical exam, symptoms, and/or response to medicinal treatment ( Agarwal et al., 2019 ), but surgical visualization and histological confirmation remains the benchmark diagnosis of endometriosis ( Agarwal et al., 2019 ; Giudice & Kao, 2004 ; Kinkel et al., 2006 ). Courts revealed a preference for a surgical diagnosis ( Plaintiff BG v. Commissioner of Social Security Administration, 2020 ), and ALJs and courts found diagnoses based solely on patient-reported symptoms unpersuasive ( Plaintiff K v. Astrue, 2011 ; Plaintiff AQ v. Astrue, 2008 ). This high standard is a significant obstacle for those with limited access to care or financial resources ( Plaintiff G v. Astrue, 2009 ; Plaintiff AC v. Barnhart, 2005 ; Plaintiff AI v. Astrue, 2012 ). In addition to sharing these common systemic disadvantages, members of marginalized communities might avoid care due to anticipated or experienced discrimination, thus reducing their evidentiary basis and finding it harder to receive a disability determination. These evidentiary, financial, logistical, and discriminatory barriers are particularly difficult for those most affected by disabilities and in need of support. The compounded times of diagnostic delay, disability claims, and appeals potentially prolong pathways to needed support. Significant endometriosis diagnostic delays exist in the United States, with past estimates stretching as high as 12 years ( Hadfield et al., 1996 ). This analysis revealed prolonged 1) times from disability to filing the cases and 2) times from cases filed to the appeals courts’ decisions. The combined times averaged more than 8 years for the 87 cases ( Table 1 ). The added delays across health care and legal systems constitute significant barriers to assistance and likely weigh heaviest on those with the fewest resources. Refusal of treatment or gaps in care were used to discount credibility and disability claims. The courts frequently considered refusal of birth control or hysterectomy as treatment refusal but did not address the risks of these treatment options or the claimants/plaintiffs’ preferences and needs (e.g., reproduction, religion). The tenets of reproductive justice emphasize that reproductive autonomy is a fundamental human right ( Ross & Solinger, 2017 ). As such, a court’s expectations that a claimant/plaintiff forgo childbirth for a treatment not guaranteed to work encroaches on their reproductive decision-making and denies them their humanity. This is more troubling considering some of the courts exhibited a false impression that hysterectomies cure endometriosis and its possible sequelae, ignoring the potential for symptom recurrence ( Namnoum et al.,1995 ; Rizk et al., 2014 ) or continued chronic pelvic pain due to abnormal pain referral patterns ( Aredo et al., 2017 ; Bajaj et al., 2003 ; Stratton & Berkley, 2011 ; Vuontisjarvi et al., 2018 ). The courts rarely considered the individual, social, and health care system factors, ubiquitous among patients with endometriosis, contributing to gaps in treatment. Gaps in treatment could also be seen as an interruption to the vital time element (continuous 12 months) of the disability definition. The time requirement was problematic with endometriosis—generally associated with menstruation and cyclic symptoms—if courts considered the condition intermittent. The expectation of duration and continuity in SSDI/SSI claims proves difficult for a condition characterized by symptom variability. The same factors that make endometriosis difficult to recognize and diagnose (e.g., symptom normalization [ Ballard et al., 2006 ; Culley et al., 2013 ; Denny, 2004 ; Young et al., 2015 ], high standard of surgical diagnosis [ Agarwal et al., 2019 ; Giudice & Kao, 2004 ; Kinkel et al., 2006 ]) potentially inhibit claimants/plaintiffs from building the medical evidence for SSDI and SSI claims courts expect. Standards and analysis applied by courts systematically discredit testimony and evidence in claims with endometriosis as an impairment. This analysis revealed limitations of applying laws and standards of review in SSDI and SSI claims without considering the complicated nuances of conditions such as endometriosis. The published court decisions varied in rationale and conclusions, and some had missing or incomplete data. In addition, SSI and SSDI claims usually include multiple impairments, making it difficult to parse issues unique to endometriosis. Appeals courts’ decisions analyzed in this study represent a small proportion of SSDI/SSI claims, and findings cannot be generalized to make larger conclusions about approval rates or process times of SSDI/SSI endometriosis claims. Broader access to data for state-level SSDI and SSI claims would help to better understand approval rates, process times, or geographic variations in endometriosis-related disability claims. SSDI and SSI determinations can bring necessary financial support and access to needed resources such as Medicaid. However, the evidentiary standards for disability claims are illsuited for conditions such as endometriosis that are difficult to diagnose and have cyclic symptoms. Additionally, this analysis revealed common misconceptions, despite medical opinion consultation, about diagnosis, treatment, and credibility surrounding endometriosis at the administrative and appeal levels. The combination of these factors creates systemic sex- and class-based discrimination in the disability system. Future policy efforts should concentrate on expanding the SSA Listing of Impairments to be more inclusive, particularly of noncancerous gynecologic conditions such as endometriosis. Furthermore, this analysis raises concern for the expertise, education, and biases of those reviewing gynecologic-related impairments. As these findings indicate, the SSDI/SSI disability claim process is ripe for reform for endometriosis and similar conditions. The current process of impairment rating and disability evaluation rests heavily in the hands of clinicians. The SSA “Medical Statements of Ability to Do Work-Related Activities” forms provide general definitions and guidelines to assess an applicant’s functional abilities and online resources provided by entities such as the American Medical Association generally explain the system. However, education on functional assessments and documentation is not readily available or expected to be performed by health providers delivering first-line gynecologic care for those with endometriosis. The primary treating provider for the endometriosis would be able to provide the most accurate impairment assessment and documentation for patients seeking a disability evaluation. Clinicians with a better understanding of the disability forms and evidentiary requirements can improve their patients’ disability applications and/or appeals.

Examining federal appeals of SSDI and SSI endometriosis-based claims across the identified themes—evidence, treatment, and time—revealed that claimants/plaintiffs face challenges including evidentiary requirements, symptom variability, and court misconceptions. A richer understanding of the process and pitfalls could guide future interventions by public health officials, clinical providers, legal teams, and policy makers to make the system more equitable across health conditions and improve application and appeals processes.