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

Abstract

Background:

Endometriosis, a chronic noncancerous gynecologic condition commonly characterized by disruptive physical and psychosocial symptoms, can be disabling. Individuals in the United States with endometriosis who are unable to work before retirement age can apply for Social Security Disability Insurance (SSDI) and/or Supplemental Security Income (SSI). Given the multi-step process of disability review, it is important to better understand how disability decisions are made. This study aimed to examine approaches and rationales of U.S. federal appeals courts reviewing SSDI and/or SSI claims involving endometriosis-related issues of appeal.

Methods:

We searched Westlaw and Nexis Uni records, available as of January 2021, for federal appeals of SSDI and SSI claims including endometriosis as an impairment. Two independent reviewers screened full-text cases and extracted data. Framework Analysis was applied to courts’ rationales regarding endometriosis-related issues of appeal.

Results:

Eighty-seven appeals addressed an endometriosis-related issue. Three themes—evidence, treatment, and time—were identified across the decisions. The courts’ discussions across themes exposed rationales and evidentiary requirements that posed challenges for claimants with endometriosis. The courts found subjective reports of symptoms insufficient evidence of impairment and positive responses to treatments to indicate cures or prevent claimants from demonstrating the necessary continuous 12 months of impairment. Some courts expected claimants to use treatments such as contraception or hysterectomy without addressing the risks of such treatments or the fact that they might have been counter to claimants’ needs and preferences.

Conclusions:

Individuals with endometriosis face evidentiary obstacles and common misconceptions about disease, diagnosis, and treatment in disability claims. SSDI and SSI endometriosis claims are systematically disadvantaged, particularly among those without access to care. The health care, policy, and legal systems can leverage the findings in this study to create a more equitable disability application and review system for those with chronic pain conditions such as endometriosis.

Endometriosis, a chronic noncancerous gynecologic condition resulting from the spread of endometrial (uterine) tissue outside of the uterus (Giudice & Kao, 2004; Zondervan et al., 2020), can be burdensome and disabling. Disruptive physical symptoms (e.g., chronic pelvic pain, dysmenorrhea, abnormal uterine bleeding, dyspareunia, dysuria, and dyschezia) (Lemaire, 2004; Zondervan et al., 2020) and psychosocial symptoms (e.g., anxiety, depression) (Lagana et al., 2017; Sepulcri & do Amaral, 2009) are common. Endometriosis frequently occurs along with other chronic overlapping pain conditions such as chronic migraine (Jenabi & Khazaei, 2020; Karp et al., 2011), irritable bowel syndrome (Surrey et al., 2018), fibromyalgia (Sinaii et al., 2002), chronic fatigue syndrome (Sinaii et al., 2002), and interstitial cystitis (Surrey et al., 2018). People with endometriosis are also at increased risk of pelvic inflammatory disorder (Surrey et al., 2018), uterine fibroids (Surrey et al., 2018), and autoimmune and endocrine disorders (e.g., hypothyroidism, rheumatoid arthritis) (Sinaii et al., 2002). Reduced productivity exhibited through presenteeism (lost effectiveness at work and at home) and absenteeism (missed days from work) can occur (Fourquet et al., 2011; Soliman, Coyne, et al., 2017). Endometriosis symptoms, co-occurring overlapping pain conditions, and/or comorbidities might lead to disability.

Individuals in the United States with endometriosis who are unable to work before retirement age can apply to the Social Security Administration (SSA) for Social Security Disability Insurance (SSDI) and/or Supplemental Security Income (SSI) through Titles II (SSDI) and XVI (SSI) of the Social Security Act (Federal Old-Age, Survivors, and Disability Insurance Benefits, 2022; Supplemental Security Income for the Aged, Blind, and Disabled, 2022). Figure 1 provides a summary of the administrative review and decision followed by appeals processes. The SSA conducts a disability determination—an essential step in determining the applicant’s eligibility for benefits—for both SSDI and SSI applications. In this legal context, disability is defined as an “inability to engage in any substantial gainful activity by reason of any medically determinable physical or mental impairment which can be expected to result in death or has lasted or can be expected to last for a continuous period of not less than 12 months” (Federal Old-Age, Survivors, and Disability Insurance Benefits: Definitions, 42 § USC 423[d][1][A], 2022; Supplemental Security Income for the Aged, Blind, and Disabled: Definitions, 42 USC § 1382c[a][3][A], 2022).

Figure 1.

Social Security administrative review and appeals courts process for Social Security Disability Insurance (SSDI)/Supplemental Security Income (SSI) disability claims. Figure 1 depicts a summary of steps involved in SSDI and/or SSI disability claims in the United States. Applications are submitted at the state level and progress through the Social Security Administration’s administrative review (left column above the bold line). At each decision level, the claimant/plaintiff can decide whether to pursue a reconsideration or appeal (progression signified by down arrows). For each consideration, the reviewer performs a five-step disability review (right column). If the application fails any of the five steps, then the claimant/plaintiff is determined to be not disabled. The Commissioner of Social Security can accept the administrative law judge’s (ALJ’s) decision, which the claimant/plaintiff can appeal to the federal appeals courts (below the bold line). Appeals courts determine whether the administrative reviewer had “substantial evidence” to support their decision. The administrative decision is either upheld or remanded for reconsideration in part or in full. For this analysis, we concentrated on decisions made by federal appeals courts (below the bold line).

The disability determination follows a five-step process (Figure 1). If a claim “fails” to meet the legal criteria at any point in the process, the claimant/plaintiff is determined “not disabled.” At each level of the SSA administrative decisions (conducted by state agencies), the claimant/plaintiff can request a “reconsideration” or appeal of the decision (see Figure 1). An administrative law judge (ALJ)—an appointed adjudicator of rules and regulations on the administrative level—hears the appeal of the reconsideration. Their decision can then be appealed to the Social Security Appeals Council (Social Security Administration, 2022). Once the administrative process is exhausted, the resulting decision is accepted as the Commissioner of Social Security Decision. Claimants/plaintiffs can appeal the SSA administrative decisions to the U.S. federal courts of appeals—first to a District court and then, if that fails, to a Circuit court (Evidence, Procedure, and Certification for Payments: Judicial Review, 2022). In the appeals, the courts review, and often cite, the ALJ’s findings, providing a window into the court’s and ALJ’s reasonings.

The procedures summarized in the preceding text and Figure 1 demonstrate the complexity of the claims system. The process itself requires resources—knowledge of the benefits, ability to complete forms, and capacity to pursue an appeal. In addition, those who apply need health care access to meet evidentiary requirements. Consistent with the fundamental cause theory, those with more social and economic capital can leverage advantages to navigate systems reliant on individual advocacy (Phelan et al., 2010). Although designed to support those in need, SSDI and SSI claims require tremendous resources to navigate, and the cases that make it to the federal courts of appeals, such as those in this analysis, represent a minority.

It is important to better understand how disability decisions are made given the multi-step process of disability review. Unfortunately, access to disability administrative decision data is restricted, but federal appeals courts decisions are published, are publicly available, and often provide summaries of the ALJs’ decisions and rationales. Therefore, federal appeals decisions are a unique data source for understanding disability decisions. Although the court decisions represent the last step in appealed disability cases, they reveal common issues that arise across claims, court approaches, and rationales applied.

A greater understanding of disability reviews could help public health officials, clinical providers, legal teams, and policy makers better address the needs of individuals disabled by endometriosis and improve disability applications. The purpose of this study was to investigate the federal appeals courts approaches and decision rationales for SSDI and SSI claims involving endometriosis using Framework Analysis.

Methods

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.

Search and Screening

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.

Framework Analysis

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).

Quantitative Data

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.

Table 1.

Characteristics of Included Federal Court Appeals Cases Addressing Endometriosis-Related Issues (n = 87)

Characteristics		SD	%
Timeline	Mean
Time from beginning of disability to claim filed	3.1 years	4.2
Time from claim filed to appeals court decisions	5.1 years	2.0
SSDI vs. SSI claims	n
SSDI claims only	32		36.8
SSI claims only	12		13.8
SSDI and SSI joint claims	43		49.4
Representation* of claimant/plaintiff
Claimant/plaintiff represented	72		82.8
Claimant/plaintiff pro se†	8		9.2
Claimant/plaintiff represented in part, pro se in part	6		6.9
Representation not reported	1		1.1
Administrative decision ruled endometriosis a severe impairment‡	45		51.7
Appeals Court decisions in favor of claimant/plaintiff (in part or in full)	34		39.1

Abbreviations: SSDI, Social Security Disability Insurance; SSI, Supplemental Security Income.

^*Representation = an attorney or other individual could represent the claimant/plaintiff in any part of the review process.

^†Pro se = “in one’s own behalf”; the claimant/plaintiff represented themselves in the process.

^‡Severe impairment = administrative decision during the disability review (Figure 1).

Qualitative Data

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.

Results

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.

Figure 2.

Flow of records.

Case Characteristics

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.

Court Decisions and Rationale

Three themes emerged in the courts’ endometriosis-related decisions: evidence, treatment, and time (Table 2). These themes and their sub-themes are discussed below.

Table 2.

Themes and Sub-Themes Emerging in Included Federal Court Appeals Decisions Concerning Endometriosis-Related Issues, With Example Quotes

Themes	Sub-Themes	Example Quotes
Evidence	1. Medical evidence. The courts recommend claimants/plaintiffs provide evidence of many medical encounters over time demonstrated by objective medical evidence (e.g., diagnostic tests, medical charts). The courts find claims solely supported by testimony of subjective symptoms as weaker. The claimants/plaintiffs should directly link symptoms with the 1) claimed impairment and 2) functional limitation, and have consistency between all testimony and medical evidence. The courts prefer that the treating physician testimony provide explanations or supporting evidence for their opinions.	1. Medical evidence. Plaintiff met her burden at Step Two. The medical record is replete with references to Plaintiff’s endometriosis and PCOS, with which Plaintiff was diagnosed in 2013. Since then, Plaintiff underwent several surgeries related to her endometriosis, numerous hospitalizations, and many diagnostic tests. Ultrasounds after her first surgery in 2013 revealed Fallopian Tube and ovary issues consistent with bilateral ovarian follicles, small myometrial cysts, polycystic kidney disease, or ovarian hyperstimulation syndrome. Plaintiff was again diagnosed with endometriosis in 2014 and her pain was noted as “sharp.” Ultrasounds in 2014 continued to show fibroids and follicles. A second laparoscopic surgery was performed in 2016 for endometriosis and lysis of adhesions (Plaintiff AN v. Commissioner, 2020, p. 2).
	2. Diagnosis. The courts give great weight to a diagnosis, but the claimant/ plaintiff’s testimony about symptoms or experiences alone is not enough to establish diagnosis. In addition, imaging tests or other results can contradict a presumed diagnosis. Although a surgical diagnosis is preferred, it is not alone sufficient.	2. Diagnosis. With no objective medical evidence confirming a diagnosis of endometriosis, [Plaintiff] tried to establish its presence by showing that she suffered from the ‘classic symptoms of endometriosis’—dysfunctional bleeding and cramps. The ALJ considered that evidence, but found that no objective medical evidence supported her complaints of endometriosis. (Plaintiff AQ v. Astrue, 2008, p. 2).
	3. Credibility. The courts weighed the credibility of witness testimony, expecting it to align with the medical evidence (e.g., physician notes, diagnostic tests, medical record as a whole) and the level of treatment or prescriptions. The courts saw indications that the claimant/plaintiff can manage symptoms or symptoms were cured as contradictory testimony as to symptom severity. Gaps in treatment history, delayed pursuit of treatment, forgoing medical treatment, or accusations of noncompliance could also lead courts to question credibility.	3. Credibility. 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).
Treatment	1. Response to treatment. The courts would perceive symptom relief as successful treatment and detrimental to a disability claim, but exceptions exist where symptoms continued despite treatment.	1. Response to treatment. …the record reflects that Plaintiff suffered from severe, and at times, incapacitating pain from endometriosis. Moreover, Plaintiff took extensive measures to treat her endometriosis, including pain medications, physical therapy, nerve block injections, and two surgeries. Ultimately, all of the treatments failed (Plaintiff L v. Berryhill, 2019, p.6).
	2. Course of treatment. Evidence of regular and continuous treatment during the claimed period of disability is supportive of the claim but is not enough alone. The courts considered gaps in treatment course or interruptions in pursuing treatment harmful to claims.	2. Course of treatment. These records [medical records] show that [Plaintiff] had regular and continuous treatment throughout the period of disability, as well as prior to and after the date last insured. Significantly, the evidence establishes that throughout the period of disability, [Plaintiff O]’ s medications were repeatedly changed in both type and dose, heavy narcotics were prescribed, and she underwent different types of therapies in an attempt to manage the pain, including physical therapy and treatment at a pain clinic (Plaintiff O v. Colvin, 2014, p.20). Although Plaintiff claims to still experience some difficulties from her ‘female problems,’ the ALJ noted that Plaintiff has not been back to see her gynecologist since April 2015, at which time she reported only ‘ordinary menopausal symptoms’ (Plaintiff AK v. Saul, 2019, p. 7).
	3. Hysterectomy. The courts often view hysterectomies as cures for endometriosis. Although the rationales were weighted toward this preconception, some courts recognized that claimants/plaintiffs still experienced symptoms post-hysterectomy.	3. Hysterectomy. One tragic aspect of the situation is the fact that the endometriosis could possibly have been eliminated completely if plaintiff had a total hysterectomy (Plaintiff G v. Astrue, 2009, p. 7).
	4. Prescriptions and pain medications. The courts referenced prescription pain medications as indicators of endometriosis severity and they factored a claimant’s decision to decline prescribed pain medications into the review.	4. Prescriptions and pain medications. Nonetheless, substantial evidence supports the ALJ’s conclusion that her gynecological condition did not prevent her from engaging in basic work activities. She never required prescription medication for gynecological pain, and had maintained a job as a file clerk or as an assembly line worker and worked despite that condition. (Plaintiff BB v. Apfel, 1999, p.4).
Time	1. Symptoms. Symptom duration and continuity (a continuous 12 months) are key, but the courts considered gaps in treatment as interruptions to the time element. In addition, cyclical symptoms and association with menstruation can earn a label of “intermittent” and be detrimental to a disability claim.	1. Symptoms. All of her physicians during this period indicated that her pain, although severe, was intermittent in nature, could be controlled with medication, and did not prevent her from performing sedentary to light physical activity (Plaintiff AU v. Commissioner, 2001b, p. 2).
	2. Estimated time absent. Supporting evidence and consistency with the medical record strengthens the estimate of time absent from work.	2. Estimated time absent. She [treating physician] believed [Plaintiff’s] IC, chronic pelvic pain, and endometriosis would cause her to miss more than 2 days of work a month. The ALJ gave significant weight to [the treating physician’s] opinion regarding [Plaintiff’s] limitations in sitting, standing/walking, and lifting. Nevertheless, he concluded [the treating physician’s] opinion that [Plaintiff] would miss at least 2 days of work a month, and that [Plaintiff] ‘may’ need to lie down during the day, was not supported by the record. [The treating physician] gave no explanation for these conclusions (Plaintiff C v. Astrue, 2012, p. 10).

Abbreviations: ALJ, administrative law judge; IC, interstitial cystitis; PCOS, polycystic ovary syndrome.

Evidence: Medical Evidence, Diagnosis, and Credibility

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.

Medical Evidence

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).

Diagnosis

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).

Credibility

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).

Treatment: Response to Treatment, Course of Treatment, Hysterectomy, and Prescription Pain Medications

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.

Response to Treatment

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.

Course of Treatment

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).

Hysterectomy

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).

Prescription Pain Medications

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).

Time: Symptoms and Estimated Time Absent

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.

Symptoms

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).

Estimated Time Absent

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).

Discussion

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.

Limitations

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.

Implications for Practice and/or Policy

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.

Conclusions

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.

Biographies

Author Descriptions

Martha Grace Cromeens, JD, PhD, RN, is an attorney, nurse, and Postdoctoral Fellow with the Research in Nursing and Global Health (RiNGH) training program (T32 NR019761) at the University of Washington School of Nursing. Dr. Cromeens studies endometriosis diagnostic pathways and disability considerations.

Kathleen Knafl, PhD, FAAN, is a sociologist and professor at UNC at Chapel Hill School of Nursing. Her expertise in mixed methods research and family response to health-related challenges includes development of the Family Management Style Framework and Measure.

Whitney R. Robinson, PhD, MSPH, is an epidemiologist and Associate Professor in the Department of Obstetrics and Gynecology at Duke University School of Medicine. Dr. Robinson uses “big data” to understand racial/ethnic and gender inequities in health and health care, especially gynecology.

Erin T. Carey, MD, MSCR, is an Associate Professor and Division Director of Minimally Invasive Gynecologic Surgery of UNC Department of Obstetrics & Gynecology in the School of Medicine. Dr. Carey’s research focuses on chronic pain syndromes in women.

Zakiya Haji-Noor, PhD, MPH, is an epidemiologist, doula, and strategy consultant for IQVIA. She researches disparities in gynecologic and reproductive health. Dr. Haji-Noor’s work spans social justice organizing, public health, and database research.

Suzanne Thoyre, PhD, RN, FAAN, is the Frances Hill Fox Distinguished Term Professor at UNC at Chapel Hill School of Nursing. Dr. Thoyre researches feeding problems of preterm infants and she led the development of the Pediatric Eating Assessment Tool (Pedi-EAT).