Guest Perspective: We invite perspectives that expand how we understand women's health, work, and the body.
Endometriosis is often framed as a private health issue. Something to manage quietly, around meetings, deadlines, and expectations that don’t bend. But for millions of women, it creates a hidden productivity tax - one workplaces are not currently designed to account for, and it imposes a cost that falls almost entirely on them - in lost income, missed opportunities, and careers quietly derailed.
Nicole Notar is part of a growing movement pushing that conversation into the open in the United States. As the founder of Endo Excision for All, a nonprofit focused on access to excision surgery and a healthcare technology company, her work sits at the intersection of patient advocacy, policy, and systems change. Drawing from her own experience of delayed diagnosis and navigating work while in pain, she is now advocating for clearer workplace protections and recognition of endometriosis and adenomyosis as serious, systemic conditions.
In this conversation, we explore why suspected diagnoses matter, what meaningful workplace accommodations actually look like, and why this is as much an economic and labor issue as it is a medical one.
1. Tell us a bit about your lobbying efforts with regard to endometriosis and adenomyosis and how it connects to your personal story and journey.
My advocacy is deeply personal. I lived through years of debilitating pain, delayed diagnosis, and barriers to appropriate care, including access to excision surgery. I also experienced the professional consequences of trying to manage a chronic, misunderstood condition in the workplace. That journey made it clear to me that endometriosis isn’t just a medical issue. It’s a workforce and economic issue. My lobbying efforts focus on bridging that gap so patients aren’t forced to choose between their health and their livelihood.
2. What does getting endometriosis and adenomyosis recognized under FMLA actually change for workers?
Practically speaking, how would this affect job protection, medical leave, and access to accommodations for people who are suspected of having, or formally diagnosed with, these conditions?
Recognition under the Family and Medical Leave Act (FMLA) strengthens the framework that these conditions can qualify as "serious health conditions" when medically supported. Practically, that means eligible workers could take job-protected leave for flare-ups, specialist appointments, surgeries, and recovery without fear of losing their employment. It also reinforces the legitimacy of requesting intermittent leave or schedule adjustments.
For people who are suspected of having these conditions or formally diagnosed, this kind of recognition reduces stigma and ambiguity. It signals to employers that these are not minor discomforts. They are potentially disabling medical conditions that warrant protection, documentation, and accommodation under existing labor law.
3. Why is a suspected diagnosis just as important as a confirmed diagnosis in these protections?
Given how long it can take to receive a formal diagnosis for endometriosis or adenomyosis, why is it critical that workplace protections don’t depend solely on official confirmation?
Endometriosis is notorious for delayed diagnosis, often taking years, sometimes close to a decade, before surgical confirmation. Adenomyosis can be equally difficult to confirm definitively. If workplace protections hinge solely on formal diagnosis, workers are left unprotected during the exact period when they are seeking answers, navigating referrals, and experiencing severe symptoms.
Recognizing suspected cases supported by medical documentation ensures that people aren’t penalized for systemic gaps in healthcare access. Protections should reflect functional impact (how the condition limits major life activities), not just whether a surgical code has been assigned.
4. What kinds of accommodations are most needed for people managing these conditions at work?
Are we talking about flexible schedules, remote work options, medical leave, pain management breaks, or something else?
The needs vary by role and severity, but common accommodations include flexible scheduling, hybrid or remote work options, the ability to take intermittent leave during flare-ups, and brief breaks for pain management.
Some individuals may need reduced lifting requirements, adjusted physical demands, or temporary workload modifications following procedures. Importantly, these accommodations are often low-cost and manageable when there is clear communication and policy guidance.
The goal isn’t special "treatment", it’s equitable access to employment while managing a chronic health condition.
5. Why has women’s chronic pain historically been excluded from workplace protection frameworks?
What systemic gaps in labor policy and healthcare recognition have left conditions like endometriosis outside of the protections that exist for other chronic illnesses?
Chronic pain conditions that primarily affect women have long been minimized, psychologized, or normalized, especially when symptoms involve menstruation.
Endometriosis, in particular, has been wrongly reduced to “bad periods,” when in reality it is a full-body inflammatory disease that can affect the bowel, bladder, diaphragm, lungs, nerves, and beyond.
When a condition is misunderstood at the medical level, it inevitably gets overlooked in labor policy.
Workplace protection systems were largely designed around visible injuries or traditionally male-dominated chronic illnesses. Invisible, cyclical, or fluctuating pain conditions didn’t fit neatly into those frameworks.
The result is a systemic blind spot: millions of people managing debilitating symptoms without clear recognition, despite functional limitations comparable to other protected chronic conditions.
This isn’t about special treatment. It’s about correcting decades of medical dismissal and policy oversight.
6. How does advocacy through federal agencies differ from passing laws through Congress?
For people who aren’t familiar with how policy change works behind the scenes, can you explain why working with departments like Labor can sometimes move faster or have a broader impact?
Passing legislation through Congress can take years and is often shaped by shifting political priorities. Federal agencies, however, have the authority to interpret and implement existing laws. That means departments like Labor can clarify how serious, systemic inflammatory diseases, including endometriosis and adenomyosis, fit within existing workplace protection frameworks like FMLA.
Agency-level advocacy can move more quickly because it focuses on guidance, enforcement priorities, and interpretation. When agencies formally recognize that these are complex, multi-system conditions that can substantially limit major life activities, it strengthens protections nationwide without waiting for entirely new legislation.
It’s about ensuring the law works for people living with real, documented functional impairment.
7. What are the biggest obstacles right now to getting these protections in place?
Is it a lack of awareness, outdated medical classifications, political priorities, economic concerns from employers, or a combination?
One major obstacle is outdated understanding. Many decision-makers still associate endometriosis with menstruation alone, rather than recognizing it as a chronic inflammatory disease that can impact the gastrointestinal system, urinary tract, nerves, lungs, and overall physical functioning.
There’s also variability in medical documentation, which creates hesitation among employers who want clarity and consistency. Add to that broader economic concerns and competing policy priorities, and progress can stall.
Ultimately, the biggest barrier is awareness. Once policymakers and employers understand the systemic nature and measurable workforce impact of these diseases, the conversation shifts from skepticism to problem-solving.
8. How does this advocacy connect to broader conversations about women’s health, disability rights, and workplace equity?
Why is this not just a health issue, but a labor rights and economic justice issue as well?
This advocacy sits at the intersection of chronic illness recognition and economic justice. Endometriosis and adenomyosis can significantly limit mobility, stamina, concentration, and the ability to perform essential job functions during flares.
When workers are penalized for those limitations, it becomes a disability inclusion issue and a workforce equity issue. Because these diseases disproportionately affect women, the economic consequences compound existing gender wage gaps and career advancement disparities.
Ensuring workplace protections acknowledges that systemic inflammatory diseases deserve the same seriousness and structural support as other chronic conditions.
It affirms that invisible illness is still illness, and that equity includes people whose symptoms fluctuate.
9. What progress has already been made, even if it’s not always visible to the public?
Are there encouraging signs from regulators, agencies, or institutions that suggest change is possible?
There is growing recognition within federal and institutional spaces that endometriosis is not a minor or localized condition but one with significant whole-body impact and measurable workforce consequences. Stakeholders are increasingly open to reviewing documentation standards, guidance language, and enforcement pathways.
We’re also seeing more employers proactively update accommodation policies as awareness improves. Progress often begins with behind-the-scenes policy conversations, coalition building, and education of regulators. Those conversations are happening, and they’re laying the groundwork for more visible change.
10. How can everyday people support this work right now?
Support starts with education.
Help shift the narrative away from “bad periods” and toward understanding endometriosis and adenomyosis as serious inflammatory diseases that can impair daily functioning.
Share accurate information, speak to HR departments about accommodation policies, and contact policymakers to ask for clear regulatory guidance. People can also support advocacy organizations, participate in awareness campaigns, and, if safe, share their lived experiences.
Real workforce stories demonstrate that this is not abstract policy; it’s about people navigating documented medical limitations while trying to remain employed.
11. For someone suffering silently at work, what would you want them to know?
Your pain is real.
If your symptoms affect your ability to sit, stand, concentrate, lift, or function consistently, that matters.
These are not minor inconveniences; they are legitimate medical limitations associated with a systemic inflammatory disease.
You deserve medical support, and you deserve workplace understanding.
Document your symptoms, seek providers who take you seriously, and know that asking for accommodation is not a weakness. It’s a recognition of your right to participate fully in the workforce while managing a chronic condition.
You are not alone, and change is actively being pursued on your behalf.
In Conversation With
Nicole Notar is the founder of Endo Excision for All, a 501(c)(3) nonprofit advancing equitable access to excision surgery and comprehensive endometriosis care. She is also the founder of Vindicara, a healthcare SaaS company. As a patient advocate, she works to reform insurance coverage, educate policymakers, and empower individuals with evidence-based information and compassionate leadership.