The way Ronna Simmons of Philadelphia describes it, every two weeks a timer goes off.
Simmons, 24, will have been doing just fine, working, taking care of her daughter. And then suddenly everything changes. Normally cheerful, Simmons says she begins to hate herself.
"I tell everybody, 'I'm not myself right now,' " she says. " 'I'll call you back when I'm Ronna again.'"
Simmons has premenstrual dysphoric disorder, or PMDD. It's sometimes referred to as "PMS on steroids." PMDD is defined by psychiatrists as a fairly rare syndrome that prompts disabling emotional and sometimes physical reactions to the hormonal changes that come with a woman's period.
Psychiatrists have been slow to formally recognize PMDD as a disorder, but that's changed under the new Diagnostic and Statistical Manual, the DSM-5, which lists PMDD as a distinct mental disorder.
Doctors who treat PMDD say women typically begin experiencing symptoms around the start of the luteal phase of their menstrual cycle, a two-week span between ovulation and the first day of a woman's period. Symptoms can include severe depression, anxiety and tension.
And then just as quickly, the symptoms disappear.
"Once your period starts," says Megan Olney, 29, from Warren, Ohio, "it's like a release. You feel OK, but then you have to deal with what you just went through."
Olney was a teenager when she realized that there seemed to be a link between her period and the extremely dark moods she was experiencing.
But when she tried getting help, she found doctors skeptical that her emotional problems could be connected to her period.
So Olney went online and diagnosed herself. She learned that PMDD is different from premenstrual syndrome (PMS), different from depression or bipolar disorder. As many as 85 percent of menstruating women have at least one PMS symptom, according to the American College of Obstetricians and Gynecologists.
PMDD is much less common, affecting no more than 1 percent of menstruating women.
The PMDD diagnosis has three main criteria. First, the symptoms have to correspond with the menstrual cycle for a minimum of two successive months.
Second, the symptoms must be truly disruptive to a woman's ability to carry out her normal activities. That's different than in PMS, where most symptoms are mild.
Finally, to be diagnosed with PMDD women must report that they aren't depressed all the time, just in the days leading up to their periods.
In PMDD, says Dr. C. Neill Epperson, who directs the Penn Center for Women's Behavioral Wellness, a woman clearly has "symptoms under a certain hormonal state that are not there under another hormonal state."
Epperson says the medical literature was until recently vague about what PMDD is and how to treat it, but that has changed.
Previous versions of the DSM lumped PMDD into a category called "not otherwise specified."
Last year, Epperson served on a work group in charge of updating the manual. The group decided to give PMDD its own entry as a full diagnosis in the latest version of the manual, the DSM-5.
Epperson says it was a controversial decision.
"I think any time a disorder occurs more frequently in women or only in women, there's going to be a group of individuals who have concern that this will diminish women's role in society, their sense of being capable," Epperson says.
One person concerned about that is Sarah Gehlert, who studies health disparities in the school of social work at Washington University in St. Louis. She has tried to find out how many women actually have PMDD, to see, as she puts it, if there was "any evidence for this disorder."
Gehlert's team randomly recruited 1,246 women from around St. Louis and Chicago. They asked the women to fill out a form every day for two months, answering basic questions about their mood and how they were feeling.
The form said nothing about menstruation. Instead, the women submitted daily urine samples, so Gehlert's team could see where each was in her monthly cycle.
"I wanted to go into it as scientifically and objectively as possible," she says.
This was especially important to Gehlert because PMDD struck her as a diagnosis that could be used against women.
"Say a poor woman was in court, trying to see whether she could keep custody of her child," Gehlert says. "Her partner's or spouse's attorney might say, 'Yes, your honor, but she has a mental disorder.' And she might not get custody of her children."
At the very least, Gehlert worries that PMDD could be overdiagnosed, pathologizing healthy women who were experiencing normal hormonal shifts. After all, she says, there's a lot of money to be made from it.
One textbook example is the prescription drug Sarafem, which was approved by the Food and Drug Administration in 2000 as a treatment for PMDD. In reality, Sarafem is identical to the widely prescribed SSRI antidepressant Prozac, or fluoxetine. The patent on Prozac was about to expire, and manufacturer Eli Lilly faced losing market share to generic versions.
So Eli Lilly gave Prozac a new name, Sarafem, and painted it pink. What had been a generic drug that cost 25 cents a pill was marketed as a PMDD-specific drug for $10 a pill.
The marketing of Sarafem raised eyebrows. In November 2010, after Lilly aired a TV commercial showing a frustrated woman wrestling with a shopping cart, the FDA sent Lilly a letter telling Lilly to "immediately cease using this broadcast advertisement and all other promotional materials for Sarafem that contain the same or similar issues."
The shopping-cart commercial never defined PMDD, the FDA said, and failed to distinguish it from PMS. "Consequently the overall message broadens the indication and trivializes the seriousness of PMDD," the letter continued. "For a diagnosis of PMDD, symptoms must markedly interfere with work, school, usual social activities, and relationships."
To Gehlert, the women in the Sarafem ads looked like normal women who were just having a tough day. That would attach any kind of normal frustration to the menstrual cycle, she says. And that could lead people to think "that women — over men — were predisposed toward that sort of behavior."
In the women Gehlert studied, just 1.3 percent fit the criteria for PMDD. The results were published in 2009 in the journal Psychological Medicine.
It's a small number, smaller than what other researchers have found for PMDD. To Gehlert the jury is still out, especially when there is still so little hard evidence about how hormonal changes interact with a woman's emotions.
"I would feel much, much more comfortable if we understood the biology behind it," she says. "Even though we found evidence, the question remains: Is what we described real?"
Megan Olney says she understands their concerns. She knows how neatly PMDD can fit into harmful stereotypes about women. But getting formal recognition for PMDD has made a difference to her.
"There comes a point where you need to realize there is a name for what you're going through," she says. "It helps you to realize that you're not alone in your struggles."
Today, there's a big online community centered around PMDD, forums where Olney and other women talk about what's worked for them — whether it's antidepressants, birth control pills or exercise and diet. They find each other on Twitter and other social media networks.
That community can be its own therapy, says Amanda Van Slyke, who is 23 and lives in Edmonton, Alberta.
The online communities have been a refuge for Van Slyke, a place where she "came out," as she puts it, as a woman with PMDD and found others willing to share their experiences with the disease.
Resources include the National Association for Premenstrual Syndrome in the United Kingdom, various Facebook sites, and the #PMDD hashtag on Twitter.
Van Slyke and other women say the forums are also a place to be reminded that, unlike other mental disorders, PMDD always goes away, at least for a while.
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Today in Your Health, some doctors describe this condition as premenstrual syndrome on steroids, PMDD, premenstrual dysphoric disorder. Between 1 and 5 percent of women suffer from this with many describing their monthly periods as deeply disruptive.
Amy Standen reports from member station KQED that the medical profession has been slow to formally recognize PMDD as a disease, but that's changing.
AMY STANDEN, BYLINE: Ronna Simmons is 24 and lives in Philadelphia. And the way she describes it, every two weeks a timer goes off. She'll have been doing just fine - working, taking care of her daughter, and then suddenly, everything changes.
RONNA SIMMONS: I utterly hate myself, just pure dislike for everything.
STANDEN: It's like she's someone else.
SIMMONS: I tell everybody, like, I'm not myself right now. I'll call you back when I'm Ronna again.
AMANDA VAN SLYKE: Sometimes you're depressed and you can't get out of bed.
STANDEN: Amanda Van Slyke is 23, lives in Edmonton, Canada.
SLYKE: You just feel like killing yourself. And sometimes you have so much anxiety you can't leave your house...
STANDEN: And then, just as quickly, it's gone says Megan Olney, 29, from Warren, Ohio.
MEGAN OLNEY: And then, once your period starts it's like this release. You feel OK. But then you have to deal with what you just went through.
STANDEN: Olney was just a teenager when she realized the link between her period and these extremely dark moods. But when she tried getting help, she found herself in a kind of medical purgatory.
OLNEY: I went to one gynecologist and she just stopped me. Like, stopped me right in the middle of my sentence and she said: This is not gynecological and you need to go to a psychiatrist, there's nothing I can do for you.
STANDEN: So, Olney went online, and essentially diagnosed herself. She learned that PMDD is different from PMS, different from depression or bi-polar disorder. The PMDD diagnosis has three main criteria. One, your symptoms start after ovulation and end around the time your period starts. Two, those symptoms have to be truly disruptive to your life. And three, you can't have an existing condition. In other words, it can't be that you're depressed all the time.
DR. C. NEILL EPPERSON: You've clearly have symptoms under a certain hormonal state that are not there under another hormonal state.
STANDEN: C. Neill Epperson directs the Penn Center for Women's Behavioral Wellness.
EPPERSON: It's the hormonal state and how the brain interacts with that hormonal state that contributes to these symptoms.
STANDEN: Epperson says one reason patients can have a hard time getting diagnosed is that the medical literature was vague until recently about what PMDD is and how to treat it. The problem was the DSM, that's a standard manual that psychiatrists use to diagnose their patients. And it lumped PMDD into an appendix, a catch-all category - not otherwise specified.
Last year, Epperson served on a workgroup in charge of updating this manual, and they decided to give PMDD its own entry in the new DSM, the DSM-5.
EPPERSON: There's enough distinct about premenstrual dysphoric disorder from other affective disorders, that we did recommend that it get included into the DSM-5 as a full diagnosis.
STANDEN: Now this may seem like a straightforward decision - taking a disease many women say they experience and codifying it in the medical literature. But PMDD is different, says Epperson. And the dispute around it has been on a low boil for more than a decade.
EPPERSON: I think anytime a disorder occurs more frequently in women or only in women, there's going to be a group of individuals that have concern that this will further diminish women's role in our society or their in a sense of being capable.
STANDEN: In other words, does calling PMDD a disease help women? Or does it hurt them by promoting the idea that some women are just completely at the mercy of their hormones?
This is something Sarah Gehlert worries about a lot. She teaches in the School of Social Work at Washington University in St. Louis. And few years ago, she did a study to see what percentage of women actually have PMDD.
DR. SARAH GEHLERT: We wanted to make certain that there was any evidence for this disorder.
STANDEN: Her team randomly recruited 1500 women from around St. Louis and Chicago. They asked the women to fill out a form every day for two months, answering basic questions about their mood and how they were feeling. The form said nothing about menstruation. Instead, the women submitted daily urine samples, so that Gehlert's team could see where they were in their cycle.
GEHLERT: I wanted to go into it as scientifically and objectively as possible.
STANDEN: This was especially important she says, because PMDD struck her as a diagnosis that could be used against women. As a feminist, she was not sure that acknowledging PMDD as a real disease was a good idea.
GEHLERT: I could imagine if this disorder were on the books and, say, a poor woman was in court trying to see whether she could keep custody of her child and her partner or spouse's attorney might say, yes, your honor but she has a mental disorder. And she might not get custody of her children.
STANDEN: At the very least, she worried; PMDD could be over-diagnosed, pathologizing healthy women who were experiencing normal, hormonal shifts. After all, she says...
GEHLERT: There's a lot of money to be made from it.
STANDEN: And a lot of money has been made off of PMDD.
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STANDEN: In 2000, the FDA approved a drug called Sarafem as a treatment for PMDD. In reality, Sarafem is identical to another drug - Prozac, or fluoxetine, which Eli Lilly was about to lose its patent on.
The company gave it a new name - Sarafem - painted it pink, and voila: a generic drug that cost 25 cents a pill could now be marketed as a PMDD-specific drug for $10 a pill.
(SOUNDBITE OF ADVERTISEMENT)
STANDEN: In the ad, a woman is looking for her car keys. She's really annoyed.
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STANDEN: These ad campaigns made it look like any woman in a bad mood could have PMDD. And to Gehlert that was exactly the danger here. If her research helped establish PMDD as a real disease...
GEHLERT: I was afraid we would attach any kind of what I would consider normal behavior, normal frustration, to the menstrual cycle. And therefore, think that women, over men, were predisposed toward that sort of behavior. And it affects any decision that's made about a woman, whether she's capable of a job, whether she's capable of whatever.
STANDEN: In 2010, Gehlert published the results of her study: 1.3 percent of the women, her group found, fit the criteria for PMDD. That's about the same percentage of Americans diagnosed with schizophrenia.
It's a small number, smaller than what other researchers have found for PMDD. And to Gehlert the jury is still somewhat out.
GEHLERT: I would feel much, much more comfortable if we understood the biology behind it. Even though we found evidence, the question remains: is what we've described real?
STANDEN: Megan Olney says she understands the concern here. She knows how neatly PMDD can fit into existing stereotypes about women that are harmful. But getting formal recognition for PMDD makes a difference to her, she says.
OLNEY: Not that I'm a huge advocate of labels, but there comes a point where you need to realize that there is a name for what you're going through? It helps you to realize that you're not alone in your struggles.
STANDEN: Today, there's a big online community around PMDD, it's a place where Megan Olney and other women talk about what's worked for them - whether it's antidepressants, birth control pills or exercise and diet. And that community can be therapeutic, says Amanda Van Slyke.
SLYKE: Like when I first, you could call it coming out with PMDD, I had talked to them like every day about all the issues I was having.
STANDEN: It's a place to be reminded that, unlike other mental disorders, PMDD always goes away, at least for a while. Ronna Simmons tells herself that pretty much every month.
SIMMONS: It's going to get better. But you have to wait for it to get better.
STANDEN: As for Megan Olney, she's pregnant now, so her PMDD, along with her period, is on hiatus. She suspects it'll come back soon after she delivers her baby. And when it does, maybe her doctors will finally know what she's talking about.
For NPR News, I'm Amy Standen.
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