RENEE MONTAGNE, HOST:
It's MORNING EDITION from NPR News. Good morning, I'm Renee Montagne.
STEVE INSKEEP, HOST:
And I'm Steve Inskeep.
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.
(SOUNDBITE OF ADVERTISEMENT)
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.
(SOUNDBITE OF ADVERTISEMENT)
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.
(SOUNDBITE OF MUSIC)
INSKEEP: It's MORNING EDITION from NPR News.
NPR transcripts are created on a rush deadline by Verb8tm, Inc., an NPR contractor, and produced using a proprietary transcription process developed with NPR. This text may not be in its final form and may be updated or revised in the future. Accuracy and availability may vary. The authoritative record of NPR’s programming is the audio record.