Why PMDD research moves so slowly

PMDD research has moved slowly because three things held it back at once. Women who could become pregnant were kept out of early drug trials for 16 years, the diagnosis sat in an appendix “for further study” until 2013, and research money still doesn’t follow the burden of conditions that mostly affect women. The diagnosis itself is now settled, and that changes what you can ask for at an appointment.

• A medical journal described premenstrual tension in 1931. The first FDA-approved PMDD medicine came 69 years later.
• PMDD’s criteria sat in the psychiatric manual’s appendix from 1987 to 2013.
• In one study, people who noticed symptoms after PMDD became official waited 2.4 years for a diagnosis, against 12.3 years before.

Every date below is on our research timeline, with its source.

How long has PMDD been known about?

Longer than most people guess. In 1931, the gynecologist Robert T. Frank published “The hormonal causes of premenstrual tension” (Frank, 1931). In 1953, Raymond Greene and Katharina Dalton named it “the premenstrual syndrome” in the British Medical Journal (Greene and Dalton, 1953). They chose “syndrome” over “tension” because the symptoms they saw reached well past tension (Embryo Project Encyclopedia).

Then not much happened for a long time. In the Niyora research library, no year before 1979 has more than 55 papers on premenstrual conditions. You can see the bars stay flat on the studies-per-year chart.

Why were women left out of the research?

Part of the answer is a rule written to protect them. After the thalidomide tragedy, a 1977 FDA guideline said women who could become pregnant should be excluded from Phase 1 and early Phase 2 drug trials, unless the drug was for a life-threatening illness (Liu and Mager, 2016). “Could become pregnant” was read to include women on birth control and women whose partners were sterile.

NIH set a policy in 1986 encouraging researchers to include women in their studies (Douthard, Whitten and Clayton, 2022). Four years later, the GAO told Congress that the policy “has not been well communicated or understood within NIH or the research community” (GAO, 1990).

The fixes came in 1993. The NIH Revitalization Act required NIH to include women and minorities in the clinical research it funds (Douthard, Whitten and Clayton, 2022). A new FDA guideline lifted the restriction on most women who could become pregnant joining early trials, and encouraged them to take part (FDA).

A condition that only happens in people with a menstrual cycle can’t be studied without them. For 16 years, the earliest stage of drug research mostly went ahead without them.

Why did PMDD stay “for further study” so long?

In 1987, the American Psychiatric Association put the first formal criteria, then called late luteal phase dysphoric disorder, in an appendix of the DSM-III-R (Epperson et al., 2012; Endicott, 2000). In 1994, DSM-IV renamed it premenstrual dysphoric disorder and kept it in Appendix B, “Criteria Sets and Axes Provided for Further Study” (APA).

Those criteria helped. Researchers could agree on who they were studying. In 1998, an NIH study in the New England Journal of Medicine switched off ovarian hormones in women with PMS, and their symptoms eased. When estrogen or progesterone was added back, the symptoms returned. Women without PMS had no mood change on the same hormones (Schmidt et al., 1998). The first FDA-approved PMDD medicine, fluoxetine sold as Sarafem, followed in July 2000 (FDA approval letter).

A diagnosis in the appendix still carries less weight. When experts proposed moving PMDD into the main manual, they wrote that it would give the disorder “greater legitimacy” (Epperson et al., 2012). DSM-5 made that move in 2013, 26 years after the first criteria (APA). The WHO’s ICD-11, adopted in 2019 and in effect from 2022, lists PMDD as GA34.41 (WHO; ICD-11).

Is PMDD research underfunded?

By the measures we have, yes. An analysis of NIH funding against disease burden found that in nearly three-quarters of diseases that mostly affect one sex, the funding pattern favors males (Mirin, 2021). A 2024 report from the World Economic Forum and McKinsey Health Institute found that women spend 25% more of their lives in poor health than men (World Economic Forum, 2024). It also found that NIH spends 11% of its budget on research specific to women’s health, and put the economic value of addressing PMS at $115 billion (McKinsey Health Institute, 2024).

For PMDD on its own, the numbers are small. We searched NIH RePORTER, the public database of NIH grants, for fiscal year 2025. Ten funded projects mentioned PMDD in their title or summary. Three had it in the title, and two of those are halves of the same study (NIH RePORTER).

Medicines show the same pause. Sertraline was approved for PMDD in 2002, paroxetine CR in 2003 and the drospirenone pill YAZ in 2006 (FDA, 2002; FDA, 2003; FDA, 2006). When we searched FDA drug labels in October 2026, every medicine with PMDD in its approved uses was an SSRI or a drospirenone pill (openFDA).

Is anything getting better?

Yes, and some of it can be measured. Our library holds 754 papers from 2025, and 209 of them are about PMDD. Registered PMS and PMDD trials went from 5 starting in 2020 to 36 in 2025. Both charts are on the timeline page.

The official diagnosis also seems to shorten the wait. In a 2026 Australian study of people who sought PMDD care, those who noticed symptoms before 2013 waited 12.3 years on average for a diagnosis. Those who noticed them after 2013 waited 2.4 years (Border and Miller, 2026). Part of that gap is timing, since newer cases haven’t had as long to wait.

The biology is clearer too. In 2017, NIH scientists found that cells from women with PMDD handle a hormone-sensitive gene complex, ESC/E(Z), differently from cells of women without it (Dubey et al., 2017). PMDD involves a real difference in how the body responds to normal hormone changes. It isn’t a weakness of character.

What does this mean for you now?

The slow history can still show up in an exam room. In the same Australian study, people saw an average of 5.1 healthcare providers while seeking a diagnosis, 56% reported a misdiagnosis, and only 19% were diagnosed with methods that match the DSM’s recommendations (Border and Miller, 2026).

The most useful thing you can do is make the pattern easy to see:

1. Rate your mood every day for two full cycles. Note irritability, low mood, anxiety and sleep, and mark the days you bleed. A confirmed PMDD diagnosis rests on daily ratings over two cycles (Reilly et al., 2024), and ICD-11 asks for the same (ICD-11).
2. Use the name. Say “premenstrual dysphoric disorder” to your GP, gynecologist or psychiatrist. It has a code, GA34.41, so it can go on your record. Our guide to how PMDD is diagnosed walks through the appointment.
3. Ask about treatment. SSRIs and some drospirenone birth control pills are FDA-approved for PMDD, and a doctor can help you weigh them. Our PMDD overview covers the other options.

If this takes a week of every month, or you have thoughts of hurting yourself, see a GP or gynecologist soon and bring your notes.

If you’d like to read the evidence for yourself, the research section explains what’s known in plain English, and what nobody has studied yet shows where the gaps still are.

Niyora is a PMS and PMDD support app. On a hard day, Moon gives you somewhere to write what happened and calm down before you answer anyone.