Dear HER-Health: Advocate for Yourself.
Dear HER-Health,
I have had pain since I was fourteen. I am thirty-two now. I was told it was normal cramps, then that I had a low pain tolerance, then that I was anxious, then that I should try losing weight. I was finally diagnosed with endometriosis last year, after eighteen years and eleven doctors. Eleven.
In that time, I dropped out of a graduate program because I couldn't sit through seminars. I turned down a promotion that required travel. I have used every sick day I've ever earned on days I couldn't stand upright.
One in ten of us has this. Why is nothing being done? And please don't tell me to advocate for myself. I advocated for eighteen years.
— Done Advocating in Denver
Dear Done,
I'm not going to tell you to advocate for yourself. You've earned the right never to hear that sentence again.
I want to talk instead about what actually happened to you, because I think it has been described to you as a series of unlucky appointments when it was something more structured than that.
What happened to you has a shape.
Your eighteen years is longer than most, but not by as much as you'd hope. The average time to diagnosis for endometriosis has been commonly described as seven years, and more recent work suggests it may be worse. A French cohort study of nearly seven thousand women, published this year, found an average diagnostic delay of ten years for endometriosis and eleven for adenomyosis. In the UK, the average time from first GP visit to diagnosis has climbed to nine years and four months, and for women from ethnically diverse communities it runs closer to eleven.
Those numbers have not been improving. In some places they are getting worse.
Now here is the finding from that French study that I have not been able to put down. Among the factors associated with a longer delay to diagnosis was being unemployed. Among those associated with a shorter delay was perceiving your financial position as comfortable, by well over a year.
Read that again. How quickly a woman gets diagnosed with a disease she already has depends in part on how much money she has.
This is what gatekeeping looks like when it's working properly.
We usually picture a gatekeeper as a person: a hiring manager, a board chair, someone who says no. That version is easy to name and easy to fight.
The version that actually shapes women's lives is quieter. It doesn't say no. It just makes yes expensive.
Look at what your condition cost you before anyone named it. A graduate program. A promotion involving travel. Every sick day you ever accrued, spent not on rest or family but on staying upright. You didn't hit a wall marked “Women Stop Here”. You made a series of individually reasonable decisions, each one shrinking the field slightly, under conditions no one acknowledged you were operating in.
Multiply that by one in ten women, across eighteen years each, and you have something that functions exactly like a barrier to advancement while never once appearing in a policy document.
I've spent a good deal of time in the last few years arguing that untreated menopause works as a gatekeeper to women's careers and leadership. Endometriosis does the same thing, only earlier. It takes women in the years they are building the foundation everything else rests on. The teens when they are choosing what to study. The twenties when they are establishing themselves. The thirties when leadership tracks are set.
A woman who spends her twenties in undiagnosed pain does not arrive at forty on the same footing as her colleagues. She arrives with a thinner résumé, less accrued seniority, lower lifetime earnings, and often a reputation for being unreliable that was assembled out of a disease nobody had bothered to identify.
Why is nothing being done?
Something is being done, and I want to be honest with you about both halves of that.
Research is moving. Work is underway on diagnostic tests intended to replace the current process, which still frequently involves years of ruling things out, with something faster. Researchers across several countries are now studying the diagnostic journey itself, trying to map exactly where women get lost in the system so the delays can be targeted rather than lamented.
And funding has risen. In the UK, government health research funding for endometriosis sat at under half a million pounds in 2019/20 and reached £1.3 million by 2023/24, with substantially more coming through other research councils.
Now the honest half. That growth is real, and it is still small. A condition affecting roughly one in ten women of reproductive age has for decades received research investment that would be considered scandalous for a disease of comparable prevalence affecting men. The recent increases did not come from institutional conscience. They came from sustained, organized, extremely persistent public pressure, from women like you, who got loud.
Where research money goes is a policy choice. It has never been a law of nature. That's the part worth holding onto, because it means the number can change.
What I'd want you to take from eighteen years. Not a lesson about resilience. I think we ask women to extract too much meaning from what was done to them.
What I'd want is this: the delay was not a personal failure, yours or any individual doctor's. It was the predictable output of a system in which women's pain is normalized before it is investigated, diagnosis requires more time and money than many women have, and research funding has lagged the burden of disease by a generation.
You were not unlucky eleven times in a row. You encountered a gate, and the gate is real, and it is currently being pushed on by a great many people.
If you have any appetite left for the fight, and you are entirely entitled not to, the most useful thing women in your position do is refuse to let the story be told as an individual one. Eighteen years and eleven doctors is data. Here is where to put it:
Put Your Symptoms into Research: The Phendo app (https://www.endofound.org/-/phendo), built by the Citizen Endo project at Columbia, exists precisely because researchers concluded that how patients describe this disease and how doctors characterize it are two different things. You track your symptoms; that tracking becomes data used to identify subtypes of endometriosis. The Endometriosis Association also maintains a long-running patient research registry. The Endometriosis Foundation of America keeps a running list of studies currently recruiting participants at endofound.org/research-opportunities. Worth checking periodically, since what's open changes.
Answer the Surveys Designed to Capture Exactly Your Experience: The EndoFollowUpProject is gathering patient perspectives to define standards for endometriosis follow-up care, and its survey is open through October 31, 2026: https://www.surveymonkey.com/r/J5JQF9X. This is the least glamorous form of advocacy and among the most directly useful. It turns what happened to you into evidence about what the system is doing wrong.
Get the Workplace Accommodation You Were Never Offered: The Job Accommodation Network, a free and confidential service funded by the U.S. Department of Labor, publishes a page specifically on endometriosis accommodations at askjan.org/disabilities/Endometriosis.cfm. It covers work-from-home arrangements, job restructuring when pain is worsened by lifting or standing, proximity to restrooms, and flexible scheduling. You can also call them at 800-526-7234 and talk to a consultant. If you had known this existed at twenty-six, you might not have turned down that promotion and someone reading this at twenty-six now will.
Say It to the People Who Set Budgets: Research funding is a policy decision, not a fact of nature, and the increases that have happened came from constituent pressure. Find your representative at house.gov and your senators at senate.gov. Write about the eighteen years, the eleven doctors, the graduate program, the promotion. Specificity is what makes a letter usable.
And if you have no appetite for it, that is an entirely legitimate answer too. You have already given this disease eighteen years. You do not owe it your advocacy as well.
I'm sorry it took so long. I'm glad you finally have a name for it. I hope the treatment gives you back some of what the waiting took.
Heather Florio
She/Her
Chief Executive Officer
