The hours that don't show up on a claim

Researchers asked a thousand women about their working lives and found the cost of endometriosis in a place no billing system looks: 12.7 hours missed every four weeks, four in ten scoring poor on work ability, and employers who mostly had no idea. The numbers are from Hungary. The shape of them will be familiar anywhere.

Almost everything we know about what a condition costs comes from claims data — the record of what was billed to somebody. It is a good system for counting surgeries. It is a terrible system for counting a Tuesday.

A study published this year in Preventive Medicine Reports went looking in the other place. Researchers at Semmelweis University compared 566 women with endometriosis against 447 without it, using two validated instruments: the Work Productivity and Activity Impairment questionnaire, and the Work Ability Index. Neither one asks what anything cost. They ask what you were able to do.

What they found

Over a four-week window, women with endometriosis missed an average of 12.7 working hours for health reasons. The comparison group missed 5.7. That is a bit more than double, and it is the least interesting number in the study.

The more telling one is presenteeism — the instrument's term for being at work while impaired, scored as the share of your effectiveness you feel you have lost. Women with endometriosis rated theirs at 47.2%. The comparison group rated theirs at 38.4%, which is its own quiet commentary on working life generally; the endometriosis-specific gap is about nine points. But it is the part that never becomes an absence, never becomes a conversation, and never becomes a line in any dataset.

Then the Work Ability Index, which asks people to rate their own capacity against the demands of their job. Mean scores were 27.2 for women with endometriosis and 30.3 for controls. And 42.0% of the endometriosis group landed in the poor category, against 17.9% of controls — a gap the authors read as a signal of elevated risk of long-term disability or leaving the workforce entirely.

Four in ten women with endometriosis rated their own work ability as poor. In the comparison group it was fewer than two.

Converted into income, the authors put the average loss at €1,757 a year — roughly a month's average salary in Hungary. Read the footnote on that one, though. The university's own statement is explicit that the figure counts income lost to absences only: it excludes reduced productivity on the days you did show up, and it excludes health care costs entirely. Which means the headline number leaves out the larger of the two effects the same study just measured. We would rather you carried the hours than the euros.

The line about employers

More than half of respondents — 54% — said their employer had little or no knowledge of endometriosis. Only 17% felt their workplace was adequately informed about a condition that affects an estimated one in ten women of reproductive age.

Asked what would actually help, women named three things: menstrual leave, flexible hours, and remote or hybrid arrangements. None of those is a clinical intervention. All of them are the kind of thing that gets decided by someone who has never heard the word adenomyosis.

Several European countries, Spain and Portugal among them, already permit menstrual leave under some circumstances. Whether that is the right instrument is a policy argument we are not going to settle here, and reasonable people land in different places on it. What the study does establish is that the women living with the condition were asked, and that is what they said.

What the study can't tell you

We would be doing the thing we complain about if we skipped this part, so: four limits, and one of them cuts against our own argument.

Participants reported their own diagnosis, with no record of how it had been established — surgically, by imaging, or otherwise. The analysis was not adjusted for age, which differed between the two groups. Recruitment ran through an app, which selects for a particular kind of participant and leans on recall. And the work-productivity questions were put only to women who were currently employed — so the very outcome the study is most worried about, women leaving the workforce altogether, is the one group its numbers cannot see. That last one probably means the true burden is understated, but "probably" is doing real work in that sentence.

It is also one country, with one labour market and one set of sick-leave norms. The hours may not transfer. The pattern, though, has been described before: a ten-country cross-sectional study published in Fertility and Sterility in 2011 surveyed 1,418 women at the time of scheduled laparoscopy and found an average of 10.8 hours of work productivity lost each week, driven mainly by reduced effectiveness on the job rather than outright absence. Do not stack that figure on top of the Hungarian one — they are measuring different things over different windows, and the 2011 number includes the impaired-at-work time the euro figure above leaves out. The shape is what carries: the loss hides inside the working day rather than outside it.

Why we are writing about this on a comparison site

Because this is the number that is missing when someone tells you the condition is being managed. A woman can have a diagnosis, a prescription, a care plan that looks complete on paper, and still be losing a day a month and half of her effectiveness on the days she is there. Nothing in her chart will say so unless someone asks.

So it is worth asking, of any service you are considering: does anyone here ever ask how I am actually functioning? Not weight, not a symptom score in isolation — sleep, work, the days you cancelled. A service that tracks only the things that are easy to bill for will describe you as doing fine right up until you are not.

We wrote about the diagnostic delay in Eleven years to a diagnosis. This is the bill for those years, paid quietly, in hours. It is worth naming even though — especially though — no one is sending you an invoice for it.

The honest disclaimer. This is general information from the women who write Selene — not medical advice, not employment or legal advice, and not a recommendation about any medication or workplace arrangement. GLP-1 medications are not a treatment for endometriosis and are not FDA-approved specifically for PMOS (PCOS). Selene is editorial: we do not prescribe, sell, or dispense anything.

Sources. Miklós D, Bokor A, Beretzky Z, et al., "Endometriosis as a determinant of work disability in the Hungarian population: quantifying productivity loss and the need for workplace prevention strategies," Preventive Medicine Reports, 2026;66:103501 (doi:10.1016/j.pmedr.2026.103501); Semmelweis University news release, "Women with endometriosis may lose a month's salary each year," 12 August 2026; reporting and figures as summarised by The American Journal of Managed Care, 14 September 2026. Ten-country comparison from Nnoaham KE, Hummelshoj L, Webster P, et al., "Impact of endometriosis on quality of life and work productivity: a multicenter study across ten countries," Fertility and Sterility, 2011;96(2):366–373.

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