Endometriosis is one example: an average of about 7 years to diagnosis, and girls who often are not believed – in health care and at school. But the pattern repeats across women's health: adenomyosis, PMOS (PCOS), PMDD, chronic pelvic pain and more. TrustHer collects and quality-checks these experiences, links them to U.S. law and international research, and turns them into a verifiable decision brief. Here you see, in black and white, where practice fails girls – and what must be fixed.
Until then, the evidence rests on international research and U.S. federal data. The country-specific numbers, voices and the 10 changes unlock – and the pilot labeling disappears – the moment the threshold is reached. Every voice counts. Help us open the United States by spreading the word.
This is not a marginal group. Endometriosis alone affects roughly 1 in 10 women of reproductive age – women and girls who live with this every single day, often for years before anyone takes it seriously.
For the United States, established figures from federal health agencies and peer-reviewed research set the baseline. Country-specific pilot findings from U.S. voices appear here once the United States is opened. Every value is marked with its source, so it can be verified.
The evidence grows stronger with every person who shares. There are two ways in – one for those with an experience, one for those with professional expertise.
Have you experienced not being believed, or waiting years for a diagnosis? Your experience becomes part of the evidence – quality-checked, anonymized, and linked to your rights.
Share your story →Are you a clinician, researcher, attorney, statistician, or do you work in women's health policy? We'd like to connect with those who can strengthen the methodology and evidence base.
Get in touch →Behind every number is a story. Until the United States is opened, the voices below are drawn from public patient communities. Every quote is reproduced verbatim and marked with its source – nothing is fabricated. U.S. voices from TrustHer's own collection appear here once the country opens.
It took me 16 years of advocating for my symptoms to finally get a discovery laparoscopy. And 4 years after that to get a proper diagnosis.
They had to cut organs apart, drain cysts, remove disease, and try to rebuild my anatomy. It was massive, painful, and life-changing. But now… it's back.
I was told there's nothing wrong – and I just had a lap two months ago.
Regular GYNs don't know what to look for. Find an excision specialist.
Anyone here lost their job because of endometriosis?
What do people do for work when battling extreme fatigue?
I am at a loss for what to do for an income. I force myself to work and basically make myself suffer.
I could no longer perform my job. I lost it because of all the absences for doctor's visits and specialist appointments.
What are some good jobs for someone with stage 4 endometriosis?
I mentally cannot handle this illness anymore. The pain, the dismissal from my husband, the lack of support from friends and family… I'm so close to a mental breakdown.
I feel like endometriosis stole my life.
No one gets it. No one. And they minimize it. Like it's not a very serious, life-threatening illness. It is.
When the pain is not believed, it is often explained by the girl herself: she is exaggerating, she is skipping class, she is anxious. Symptoms of a physical illness are redefined as a behavioral or psychological problem – and the workup detours away from the real cause. The years lost on that detour are part of the invisible years.
"I was told I had a low pain tolerance. That I was exaggerating. That I was lazy."
These experiences challenge concrete provisions of U.S. federal law. Below, real quotes from the public patient community are linked to existing statutes. This is not a legal ruling, but a demonstration of where practice and law conflict – and what must be done.
Methodological note: Until the United States is opened, the examples below are drawn from public patient-community posts, not from a verified U.S. sample. The point is not scale, but that the conflict occurs and the legal basis exists. The national-scale module opens once the data is in place.
The patterns in this brief touch on frameworks the United States has adopted or endorsed. The 2030 Agenda for Sustainable Development was adopted by the U.S. at the UN in 2015. Note: the U.S. signed the Convention on the Rights of the Child (1995) but has not ratified it – it stands here as an internationally recognized standard, not binding domestic law. That gap is itself part of the argument.
All rights apply to every child without discrimination. Health-based exclusion from education conflicts with this principle.
A child's best interests must be a primary consideration in all actions concerning them – including how schools and health care meet sick girls.
Children have the right to express themselves freely in all matters affecting them, and their views must be given weight. Not being believed undermines this right.
The right to the highest attainable standard of health and to health services. Years-long diagnostic delay challenges this right.
The right to education on the basis of equal opportunity. Lack of accommodation for chronic illness blocks access.
Diagnostic delay and dismissal in health care work against the goal of universal health coverage and quality care.
School absence and lack of accommodation keep girls from realizing their right to education.
Systematic minimization of girls' health complaints perpetuates gender-based disparity in health.
Early intervention prevents long-term exclusion from the workforce. The voices point to real loss of income.
Chronically ill girls face systemic barriers that create lasting inequality in health, education and income.
We present no finished total, because we do not have the population data to back one. Instead we show the calculation openly, with citable sources for every assumption. Enter the numbers yourself – then you own the conclusion.
The productivity loss we calculate below is only one of four cost layers – and it covers endometriosis alone. The staircase shows the full societal cost. We quantify only what we can source; the rest stays open until the data is in place.
Lost work capacity – reduced performance and absence. ~6.4 h/week per woman (Soliman 2018, U.S. data). This is the layer the calculator below computes.
Primary and specialist visits, imaging, repeat surgeries, medications and long diagnostic pathways.
Sick leave, short- and long-term disability (SSDI) for those who fall fully or partly out of the workforce.
Interrupted or delayed schooling and education that produce lasting lower workforce participation and lifetime income.
This decision brief expands continuously. The following modules are fully built and open automatically for agencies as soon as the data reaches the threshold for statistical power. The foundation is being built now.
Estimated number of affected girls and women in the U.S., with uncertainty intervals.
Actual absence from school and work, linked to public records.
Wait times and accommodation by state and health system – where does the system fail most?
National economic cost with every assumption substantiated against administrative data.
Effect on completed education, workforce participation and income over time.
Weighting against the population so findings can be generalized nationally.
Where our own pilot is small, it does not stand alone. The following figures are peer-reviewed or from official health authorities, and linked to the source.
The White House, NIH and WHO have already elevated the gender gap in health to a priority. For those who run health systems, states, districts and schools, that means the backing is in place – what is missing is local action and a verifiable evidence base to act on. That is what TrustHer delivers.
The points below are a synthesis of needs that recur in the patient community – what women themselves say would make a difference – cross-checked against U.S. and international research. Until the United States is opened, the order reflects the research base, not a ranked vote.
The most common of all: not having to fight for years to have symptoms taken seriously instead of minimized.
Research: Hoffmann & Tarzian (2001) documents that women's pain is taken less seriously and more often attributed to psychological causes.Early referral for workup instead of years of trial and error in primary care.
Research: WHO and Soliman 2017 call for earlier diagnosis; the U.S. average today is ~7 years.Access to clinicians who actually know the disease, without long travel or out-of-pocket cost.
Research: WHO points to the need for better training of health workers across countries.Physical symptoms worked up as physical – not redefined as behavior or anxiety.
Research: Hoffmann & Tarzian (2001) – women's physical complaints are more often attributed to psychological causes.Absence that isn't punished, restroom access and pain management, understanding instead of principal's-office meetings.
Research: Section 504 (34 CFR 104) requires accommodation of disabling chronic conditions in federally funded schools.Flexibility, remote work and adjusted hours instead of dropping out of the workforce entirely.
Research: Soliman 2017 – ~6.4 hours of lost work productivity per woman per week (U.S. data).Knowing you have a right to accommodation and support – and that chronic sex-specific conditions count.
Research: The ADA requires reasonable accommodation for disabling conditions.Support for the burden the disease creates – in addition to, not instead of, physical treatment.
Research: APPG 2020 – 90% wanted access to psychological support as part of treatment.One path through the system instead of being bounced between providers with no one seeing the whole picture.
Research: ACOG calls for coordinated recognition and management of persistent pelvic pain.Synthesis based on recurring needs in the public patient community, cross-checked against womenshealth.gov, Soliman (2017), Simoens (2012), ACOG and APPG on Endometriosis (2020). Full source list under "Methodology & sources."
This is a pilot document. The more people who share their story, the stronger the evidence – and the harder it becomes to look the other way.
Every number in this brief is derived from verifiable sources. Here we show how data is collected, which thresholds apply before we publish national findings, and which research the calculations rest on. Nothing is fabricated.
Collection follows recognized methodology for health data, with emphasis on privacy, validation and verifiability.
Country-specific findings are published only once the data is large enough to be reliable. Below the threshold we show qualitative findings and international research, clearly marked as such.
All external figures are drawn from peer-reviewed research or official health authorities, and linked to the source.
The rights below are current U.S. federal law. The legal analysis above shows where practice challenges these provisions. Each statute links to its official text.
This evidence base grows stronger the more experts quality-check it. Whether you are a clinician, researcher, attorney, statistician, or work on women's health in government – we'd like to hear from you. Point us to sources we've missed, challenge the methodology, or contribute to the collection.
