Halle Deakin, with edits by Romina Garcia de leon and Tashi Stampp.
Waiting 15 years for a diagnosis isn’t just bad luck. It’s a systemic failure.
We know the gaps. If you’ve read women’s health blogs—or lived through them—you know that diagnosing conditions like PMOS (polyendocrine metabolic ovarian syndrome, formerly PCOS), endometriosis, and PMDD is an exercise in patience we shouldn’t have to endure. It takes fifteen years on average.
Fifteen. Years.
Female health is starving. Underfunded. Under-researched. The result? Neglect from providers. Dismissal of symptoms. Stigma from people paid to help. And even when the diagnosis finally comes—rare as it might be in a timely fashion—the guidance is often nonexistent. What do you do?
Here is the uncomfortable truth: those living with these conditions are the real experts. They know the journey. They know where the healthcare system trips, falls, and gets lost. They have a stake in this work that researchers do not. So why do they have the least say?
The Old Way is Broken
It wasn’t until 1993 women could even participate in clinical trials.
Think about that timeline.
Since then? Little changed, structurally. Women were allowed in the lab, yes. But they stayed in the role of “subject.” Passive. Data points. They didn’t ask the questions. They didn’t analyze the answers. They didn’t decide how those answers were shared.
Collecting data from people with PMOS or endometriosis is useful. Necessary, even. But letting them sit back and be measured isn’t enough. We need them designing the studies. We need them looking at the numbers.
Shift the Lens
Patient-oriented research is all the buzz lately. It sounds nice. “Engagement.” “Inclusion.” But look closer. There are barely any examples where women with these specific conditions are true partners in the work.
We need a shift.
Stop treating them like passive participants. Treat them like colleagues. When clinicians and academics stop viewing “lived experience” as an anecdote and start viewing it as expertise, everything changes. That insight is just as valuable as a PhD or a published paper. It often carries more weight regarding what actually matters to patients.
This means real collaboration. Not a checkbox exercise.
Patient advisory councils are one model that works. These aren’t just support groups; they are working committees. Females with lived experience join forces with researchers to guide the process. They build community. They ensure the research aligns with their priorities. It drives change because it is grounded in reality, not theory.
Leading by Example
There are pioneers doing it right.
- The Endometriosis and Pelvic Pain Lab
- The EMBRACE Women’s Health Lab
These groups are proving the concept. They unite clinicians and those with lived experience to attack these problems head-on. Advocacy groups are also raising the volume on the gaps that exist. But there are not nearly enough of these units. We need more tables where the conversation includes the people actually living in the storm.
Do the Work That Matters
If we partner with those who have the scars to show for it, research gets smarter. It gets responsive.
We have limited funding. Every dollar needs to count. Partnering ensures we spend money answering questions that improve life, rather than questions that just pad a researcher’s CV. Which would you prefer?
The bonus? Patient partners often find themselves healthier too. Working with others who get it empowers them. They gain skills. They regain control over their own bodies and stories.
So here is the ask. It’s simple.
If you have lived experience, step up. If you know someone who does, support them. If you are a researcher or clinician—stop assuming you have the monopoly on knowledge. Advocate for them. Bring them to the table. Not as extras. As partners.
The gaps are still there. The work is waiting. Who’s ready to fix it?
