Premenstrual Syndrome Not Fully Accepted as Medical Disorder : Organization Sheds Light on ‘Taboo’ Subject of PMS

When Virginia Cassara founded PMS Action in 1980, a marketing professor strongly disapproved and advised her “never to name anything after anything unfamiliar.”

Six years later, name recognition is the least of the thriving information bureau’s worries. Thanks largely to the efforts of its 43-year-old executive director, premenstrual syndrome is much better known. But that doesn’t mean the controversial ailment associated with the menstrual cycle has been wholeheartedly accepted as a medical disorder. Some members of the medical community and the general public doubt that the condition exists at all and, if it does, whether it’s physiological or psychological.

“PMS is still very much a closeted issue,” noted the director of the Irvine-based nonprofit organization that links up PMS victims with treatment.

In an effort to shed light on the taboo topic, PMS Action is sponsoring a half-hour talk show on an Orange County radio station. “Let’s Talk About PMS” airs at 10:30 a.m. Mondays on KPZE (1190 AM), a Christian radio station in Orange.

Cassara, who hosts the program with Long Beach gynecologist Dr. Stan Olenick, 40, believes the program is the first of its kind. “There have been women’s health talk shows that mention PMS, but this is the first radio program exclusively on premenstrual syndrome,” she said.

Dr. Harinder Grewal, a psychiatrist with practices in Anaheim Hills and Corona, hosts two radio programs on women’s health issues, including PMS. She can be heard 10 a.m. Saturdays on Glendale-based KIEV (87 AM) and at 4 p.m. Tuesdays on KPZE.

A combination of factors has conspired against the disorder, which is believed to be as physiologically based as other diseases, Olenick and Cassara said on a recent program titled “Why PMS Is Only Now Being Accepted as a Legitimate Medical Disorder.”

During the live program, Olenick blamed the medical community, which he says is slow to study the disorder, which affects up to 40% of women and has remained resistant to the treatment of its symptoms, which include tension, depression, irritability, fatigue, headaches and food and alcohol cravings.

“There was very little in the medical journals until a year and a half ago,” he said. “Even to this day there isn’t much medical writing about PMS.”

A practicing gynecologist since 1978, Olenick said he did not begin treating patients for PMS until three years ago, when they inundated him with articles from women’s magazines--the first source of information on the topic.

Still, many of his colleagues have been slow to follow his lead, due largely, he believes, to economics.

“(Treating PMS) is not economically lucrative,” he said. “It takes time. A gynecologist can see three or four patients in the time it takes to see a single PMS patient.”

Even among physicians who do recognize PMS, treatment for symptoms, which can occur up to two weeks before menstruation, is a subject of debate. Some prescribe the natural hormone progesterone to correct a hormonal imbalance that has been noted in PMS suffers. Others advocate “life style changes” such as a low-salt, caffeine-free diet and regular exercise.

It wasn’t until last year that the Washington-based American College of Obstetrics and Gynecology came out with a first formal stance on the issue in a statement from a professional practices committee. “Basically we recognize it (PMS) as being a medical disorder, but no one is sure what symptoms are included and what you can do about it,” said spokeswoman Laurie Hall. The college estimates that between 20% and 40% of women experience some degree of difficulty with PMS, 5% of them to a degree that significantly affects their work and life styles.

Meanwhile, factions in the American Psychological Assn. are protesting the proposed inclusion of premenstrual-like symptoms as a psychological disorder in an upcoming appendix of the American Psychiatric Assn.’s Diagnostic and Statistical Manual, viewed widely as the bible of mental health diagnosis.

Feminist Resistance

Feminists, too, have been a source of resistance, saying that recognizing PMS perpetuates negative female stereotypes. They have argued that there is no conclusive evidence that mood variability in women differs significantly from that in men with similar life styles. Some view the designation as an attempt by some doctors to profit from making a health problem of the normal, biological function of menstruation.

“I think before people talk about this as a real illness, there’s got to be much more data and much more agreement on what constitutes the problem,” said Susan A. Basow, a women’s studies professor at Lafayette College in Pennsylvania, whose recently released book “Gender Stereotypes” is critical of the designation. “I think by the current, loose definition, it (PMS) fosters the stereotype that women are untrustworthy.”

Another stumbling block to acceptance has been PMS’ transitory symptoms, which can include confusion, paranoia and what Cassara calls “distorted perception.” Under their influence, she said, women may not note a cyclical connection--or, if they do, lack the wherewithal to get help.

“In order to seek out treatment, you have to have energy, initiative and confidence, yet the symptoms make us feel crazy, tired and lacking in energy,” she said. “Plus when the symptoms are worse they seem to magically disappear.” As a result, the symptoms are often dismissed as psychosomatic.

Fighting Taboos

Then there is the matter of what Cassara calls the “two taboos. First you have the taboo of menstruation and then you have shame over the symptoms,” she said. “It’s difficult to admit that once a month I’m a raving lunatic, I drink myself into oblivion or I beat my children.”

A premenstrual syndrome sufferer herself, Cassara said she didn’t make “the PMS connection” between her monthly cycle and behavior that cost her two marriages and kept her mired in a “cushy job” until she was 36 years old.

“For years I thought I was a manic-depressive who was cheated out of her mania,” she said. “I was either normal or depressed.”

After unsuccessfully seeking help in the United States, Cassara flew in 1979 to England, where she received treatment from the recognized pioneer in the field, British physician Katharina Dalton. Dalton prescribed the progesterone that has kept Cassara symptom-free for the past seven years.

Inspired by Dalton’s example, Cassara began PMS Action shortly thereafter in Madison, Wis. She moved the organization to Irvine two years ago because she felt the liberal atmosphere in Madison, home of the large University of Wisconsin, was not conducive to her work.

“I thought of Orange County as being conservative and I’m just thrilled with the choice,” she said. “It’s so refreshing not to have to apologize for what you’re doing. I felt that I was spending a lot of energy defending our position that could have been better spent helping women.”

Phone Began Ringing

The idea for hosting the radio program came in May after Cassara appeared briefly on another one of KPZE’s shows. (The radio station airs three, half-hour health programs five days a week under the banner Health Talk.)

No sooner did the program end than Cassara’s phone began ringing. “I was surprised by the immediacy of the response,” she said. “PMS is an issue where women will clip out an article and not act on it.”

This time the Doubting Thomas was Health Talk producer Ken Jones. “I thought you could run out of PMS material in three or four weeks,” he said. But when Cassara showed him a list of possible topics, including PMS and its effect on relationships, career choices and self-esteem, he agreed to produce the program at a cost of $300 a show.

Now “Let’s Talk About PMS” is scheduled to air on a trial basis for the next two months. Listeners are invited to call with questions, which are answered on the air. The first show aired Sept. 8.

Innovative Approaches

Saying she “eats, sleeps and drinks PMS,” Cassara is used to taking innovative approaches to disseminating information about the disorder. At a 1984 National Science Foundation conference on the topic, for instance, she threw out her prepared speech, “View From the Top of a Consumer Organization,” in favor of personal testimony when she suspected that none of the participants had actually spoken to a PMS victim. Then in an appearance last April on “The Oprah Winfrey Show” before it became nationally syndicated, she and her first husband--”a wonderful man who was very adoring and whom I loved”--discussed how her symptoms contributed to the breakup of their marriage.

(“I was so tired half the time, I didn’t want to play tennis or go to parties or make love. I just wanted to be left alone.”)

She also has contributed to two books slated for publication later this year--”PMS: Ethical and Legal Implications in a Biomedical Perspective” (Plenum) and “Premenstrual Syndrome: New Findings and Controversies” (Churchill-Livingston).

“My primary message is there’s life after PMS and we all deserve it.”