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The PMDD Phenomenon : Breakthrough Treatments for Premenstrual Dysphoric Disorder (PMDD) and Extreme Premenstrual Syndrome

The PMDD Phenomenon : Breakthrough Treatments for Premenstrual Dysphoric Disorder (PMDD) and Extreme Premenstrual Syndrome

by Diana L. Dell, Carol Svec

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Premenstrual Dysphoric Disorder (PMDD) and extreme premenstrual syndrome (PMS) are debilitating conditions that affect millions of women worldwide. If you suffer from PMDD or PMS you know that the intense symptoms of depression, anxiety, and irritability in the days before your period can wreak havoc on your personal relationships and self-esteem.



Premenstrual Dysphoric Disorder (PMDD) and extreme premenstrual syndrome (PMS) are debilitating conditions that affect millions of women worldwide. If you suffer from PMDD or PMS you know that the intense symptoms of depression, anxiety, and irritability in the days before your period can wreak havoc on your personal relationships and self-esteem.

In The PMDD Phenomenon, Diana Dell, M.D., who specializes in the treatment of PMDD and PMS and in reproductive psychiatry, gives authoritative information on the latest treatments available.

Product Details

NTC Publishing Group
Publication date:
Edition description:
First Edition
Product dimensions:
6.38(w) x 8.82(h) x 0.65(d)

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Is PMDD Real?

Sometimes I would just snap. There was so much anger, I felt like I just wanted to grab something breakable and slam it down and break it and shatter it and just explode.--Toni

Ever had a headache? Really? Prove it.

Imagine if only 2 percent of all the people in the world ever got headaches. How would you prove to doctors and scientists that your headaches were real? There are no blood tests, X rays, or body scans that can be used to diagnose a headache, except for the exceptional few, such as headaches due to brain tumors. Pain itself cannot be seen on a monitor. What if the other 98 percent of the world didn't believe that you could just wake up in the morning with pain in your head, or go home after a day of work with throbbing temples? Or, what if other people believed that the pain you felt was psychosomatic and that you were just using the so-called headache as an excuse to get out of work . . . or that aspirin companies had brainwashed you into thinking you had a headache just so they could sell more pills . . . or that you should accept your fate and suffer in silence so that you wouldn't be branded as "sick"?

Are headaches real? Of course they are. Everyone has had at least one, so there is no debate. And they come in different intensities, from a mild working-at-the-computer-too-long variety to the extreme pain of a full-blown migraine. What causes migraines and most headaches is still unknown, but there is no doubt that they exist, and people who have them need and get sympathy and treatment.

Is premenstrual dysphoric disorder (PMDD) real? Of course it is. As with headaches, there are no specific diagnostic tests for PMDD, it comes in different intensities and varieties, and the actual cause is still unknown. But because PMDD has been experienced by only a small fraction of the world's population, there is considerable debate and controversy about the diagnosis.

The discussion often becomes quite heated. If you or a loved one has PMDD, or even if you've just tried to talk about the topic, you've likely heard at least some of the controversy from friends or your health care practitioner. One woman reported that she had to listen to a male nurse go on a tirade about how PMDD was a "made-up disease" while she was in the hospital in labor giving birth to her second child. Although that may not have been the appropriate time or place for a discussion of the merits of PMDD as a diagnosis, many of the concerns are well intentioned and the issues deserve attention and responses. Here are some of the most commonly heard questions and arguments.

Question 1: PMDD is a modern invention, perhaps caused by the stresses of modern times. Otherwise, why haven't we heard about it until now?

Actually, premenstrual symptoms have been reported in medical writings for centuries. During the fifth century B.C.E., Hippocrates wrote that retained menstrual blood could cause serious symptoms, including delusions, mania, and thoughts of suicide. Writings from the time of the late Renaissance show that premenstrual suffering was commonly reported, and a survey conducted in the 1800s showed that 20 percent of all women experienced serious psychological troubles premenstrually. Those physicians of old described symptoms such as nervous over-excitation, sensory disturbance, mood changes, sadness and depression, involuntary fits of weeping, anxiety, psychosis, irritability, impatience, and being "difficult to live with"--words that sound familiar even today.

In the 1900s, physicians began scientific research of this complex of symptoms. The disorder has been named and renamed several times in the past seventy-five years, and each name change reflected a greater understanding of the problem. It has been called "premenstrual tension," "menstrual molimina," "premenstrual intoxication," "premenstrual distress," "premenstrual syndrome," "late luteal phase dysphoric disorder," and "premenstrual dysphoric disorder." Although we've come to define premenstrual syndrome (the familiar "PMS") as referring to milder symptoms, the initial intent was the same for all of these diagnoses, regardless of name. They were intended to describe a group of cyclic changes in personality and distressing physical symptoms that, according to a 1938 article by Dr. S. Leon Israel, "appears abruptly from 10 to 14 days prior to the expected menstruation and terminates dramatically with the onset of the flow."

Medical literature about premenstrual symptoms published in the early 1900s reflects the colorfully descriptive writing consistent with that time in scientific reporting. The condition was described as "indescribable tension and a desire to find relief by foolish actions difficult to restrain" (Frank 1931); "a feeling of the sensation of wanting to jump out of one's skin, with marked physical unrest and constant irritability, and with the forbearance of the patient's family taxed beyond endurance by her unnatural and extreme annoyance with trifles" (Israel 1938); "a clinical picture of depression, hyperirritability, irascibility, and a hair-trigger temper," among other symptoms (Stieglitz 1949); "a distressing impairment of the sufferer's psychic and physical well-being" (Morton 1950).

Women themselves have always known that they felt different premenstrually, but they didn't always talk about it. In a 1941 article published in the American Journal of Medical Science, Drs. Edward J. Stieglitz and Seruch T. Kimble wrote that symptoms were often ignored by physicians and women alike because "they have come to feel that it is an unavoidable evil, an inevitable part of the distress of menstruation . . . these patients suffer for years in silence on the assumption that because their mothers and elder sisters suffered, they too must endure this distress."{Q}AU: PLEASE ADD THIS TO REFERENCES SECTION. ARTICLE PUBLISHED IN 1949 BY THESE AUTHORS IS THERE, BUT NOT ONE IN 1941.{QX}

Throughout the 1900s, scientists endeavored to describe and understand women's premenstrual symptoms. As science progressed, the name for this phenomenon kept changing. As it became obvious that psychological symptoms were a major cause of distress, it was called "premenstrual tension." When a physiologic chemical was hypothesized to cause the change in personality, it was called "premenstrual intoxication." When it was noted that there was a cluster of potential symptoms that followed a typical pattern, it was called "premenstrual syndrome." In an effort to create a more specific and scientifically descriptive name, the name was changed to "late luteal phase dysphoric disorder." And finally, in 1994, when it became obvious that there were different patterns of symptoms that might also involve the early luteal phase, the disorder became known as "premenstrual dysphoric disorder," a term that gives appropriate weight to its predominant mood-related symptoms.

So why didn't you hear about PMDD earlier? You did. Only then it was called premenstrual syndrome (PMS). Most people outside the medical profession only heard about this new term when television commercials for Sarafem, the first medication approved for treatment of PMDD, were aired in 2000. The commercials were new, but the disorder has been around forever.

Question 2: If PMDD is nothing more than PMS, why create another category of disorder?

Although the term premenstrual syndrome was coined in the 1950s, most women didn't hear about it until the 1970s. By then, television and other mass media outlets were more common and pervasive than in the 1950s, and the concept of PMS became popularized because information could be disseminated more easily. Back then, knowing that there was such a thing as PMS was a relief for many women. Finally there was a name for the bloated, puffy, achy, tender transformation our bodies underwent each month, and recognition of the emotional tortures and plummeting self-esteem some women suffered. Having a name for the disorder gave us a common language we could use to discuss our problems with other women and with our doctors. There was strength in labeling that bad time of the month because if we could name it, we could understand it and perhaps fix it.

But as the concept of PMS caught on and found acceptance, it lost its original meaning. Every time a woman raised her voice in anger, there was the danger that her actions would be labeled as part of PMS. Humor, too, helped trivialize the syndrome. It was one thing for women to joke amongst themselves, but when talk show hosts, television sitcoms, husbands or lovers, and bosses started joking about PMS, the power behind the name became diluted. In time, PMS became a term of ridicule. Any emotion, passion, or argument--at home or in the workplace--could be labeled PMS by others, and therefore dismissed. By separating PMDD from PMS, the medical community is acknowledging that it recognizes that there are some women with very severe, potentially disabling symptoms who need an appropriate diagnosis and treatment.

Question 3: PMDD is strictly a problem of women in the United States. If it's real and biological, why don't we find PMDD in other parts of the world?

In fact, premenstrual symptoms have been reported in many other countries, including Great Britain, Italy, India, Pakistan, Nigeria, and China. Nearly every country in which premenstrual symptoms are found, PMDD or severe PMS can be diagnosed in approximately the same number of women as has been found in the United States--3 to 9 percent. A study conducted in Italy found that even women who were generally unaware of the concept of PMS still had the standard, or classic, symptoms of breast tenderness, tension, and avoidance of social activities premenstrually.

One of the reasons critics argue that PMDD doesn't exist everywhere is because women across the globe don't spontaneously report the same set of symptoms. For example, studies show that in other countries, particularly in less industrialized parts of the world, women report physical symptoms more often than emotional symptoms. It's important to remember, however, that in many of these countries, it is not as accepted or typical to talk openly about emotions. When these women are asked directly, they often admit to premenstrual depression and irritability.

In extremely underdeveloped nations, where premenstrual symptoms are not reported as often as in developed nations, the very hardship and harshness of the lives of women there may explain the lack of PMS. It is known, for example, that exercise can help alleviate premenstrual symptoms, and women in underdeveloped nations must expend considerable energy just to get through their days. Their day-to-day activities could very well be protecting them against PMS. Social expectations in various nations may also play a part in which symptoms get reported and which do not. Not all women have the same freedom to acknowledge and express their anger and irritability as do women in the United States. Future research will undoubtedly focus on which symptoms are common to all women, which symptoms are culturally based, and what factors might protect some cultures from the full effects of PMS.

Question 4: PMDD "medicalizes" a normal female function and will cause hundreds of thousands of women to be labeled "sick." Being irritable and emotional is part of life, why should we take pills to dampen normal emotions?

Premenstrual dysphoric disorder is not your average mood swing. Anyone who has experienced PMDD or severe PMS knows how far from "normal" this disorder is. Yes, menstruation is a normal female function. Yes, hormone fluctuations are part of normal female physiology. And yes, some premenstrual symptoms are common and normal. But the symptoms of PMDD make women feel like something is terribly wrong. When asked to describe the feelings they have during their premenstrual week, women with PMDD have said, "I feel like someone else is living in my skin," "I'm not myself," "it's like Jekyll and Hyde," "I turn evil," "I can't stand myself," "it's like having severe sunburn of your emotions, everything hurts." For that one week, lives are turned upside-down.

As an analogy, consider acne in puberty. Hormonal shifts are a normal part of adolescence, and acne is common among teenagers. But there are a few people who have acne that is so severe it scars the skin, lowers self-esteem, and makes a tremendous impact on their ability to have "normal" social lives. Because acne is visible, no one says, "Hey, it's a few pimples. It's a normal part of growing up; you'll outgrow it." Everyone can see the devastation. Therefore, for very severe acne, doctors prescribe medications that can make a real difference in a teenager's life.

The symptoms of PMDD are not as apparent, but they are just as real. And if women with symptoms are having a tough time functioning, they deserve to be treated. No one is talking about medicating an entire generation of women, just the ones who need help. If that's one woman or one million women, treatment should be offered when needed.

Question 5: How can PMDD be a "real" disorder when there are no physical differences between women with PMDD and women without PMDD?

In the early days of research, scientists did studies to see if there were any differences in what seemed like the obvious problem area: women's hormones. They found no difference in circulating levels of estrogen or progesterone, which led them to believe that there were no physiologic differences. More recent research, however, has turned up some important differences between women with and without PMDD.

The most significant difference involves the neurotransmitter serotonin. Dr. Andrea Rapkin of the UCLA School of Medicine and her colleagues measured the amount of serotonin in the blood of women with and without premenstrual syndrome. In women without premenstrual symptoms, the amount of serotonin increased the last ten days before their periods; but in women with PMS, the amount of serotonin decreased. In all people, serotonin is the precursor for melatonin in the brain. Dr. Barbara Parry of the University of California, San Diego, has performed many experiments that show that women with PMDD have lower levels of melatonin than women without PMDD throughout the menstrual cycle. The assumption is that lower levels of melatonin means lower levels of serotonin. Since low levels of serotonin are associated with feeling depressed and/or aggressive, these studies suggest a strong link between the mood symptoms of PMDD and low levels of serotonin.

Because PMDD and PMS are complex conditions, the research often focuses on subtle differences. For example, women with premenstrual symptoms have been shown to have lower levels of allopregnanolone in the luteal phase of their menstrual cycles compared with women without premenstrual symptoms. (Allopregnanolone is a by-product of the metabolism of the female hormone progesterone.) And women with PMDD have been shown to secrete some hormones, such as the stress hormone cortisol, at different times compared to women without PMDD.

As research into the causes of PMDD and PMS progresses, other physiologic differences will come to light. But even the limited data available in this area now give a clear indication that there is something special going on biologically with women who experience premenstrual symptoms.

Question 6: Wasn't PMDD made up by the drug companies to sell more drugs to women? Eli Lilly was about to lose its patent on Prozac, so it created a new disorder, repackaged the drug, and now stands to make billions of dollars.

The drug companies did not "make up" PMDD. Unless they've been in business for the past 2,000-plus years, they couldn't have made it up. Women have been suffering for centuries.

And, fortunately, pharmaceutical companies don't have a magic wand they can wave to make scientists, government officials, and physicians all do exactly what is best for the company. It's a long, involved process to get to the point where a new drug can be marketed. The process starts with drug testing to show that a particular medication works as a treatment. Scientists don't randomly choose drugs and test them to see if they work on various disorders. Fluoxetine hydrochloride (the generic name for Prozac) is a selective serotonin reuptake inhibitor (SSRI), a type of medication that makes the neurotransmitter serotonin more available in the brain. Because one of the working theories about PMDD is that women with the condition may have lower levels of serotonin, it made sense to test Prozac as a treatment for PMDD.

Fluoxetine spent years in testing, and, according to experts, it was the first drug that actually helped improve symptoms. Dr. Meir Steiner of McMaster University in Hamilton, Ontario, Canada, testified in U.S. Food and Drug Administration (FDA) hearings that "As old as I am and [for as long as I] have been in this field, this is the first time that something works. This is the first time that the clinic got flowers from husbands. We treated something that sort of restored life in some of these households. Clinically, this was so impressive that it was almost unbelievable." After reviewing the research, the FDA approved fluoxetine as a treatment for PMDD.

Was it good timing for the pharmaceutical company? Sure. But this wasn't a last-ditch effort to save a source of revenue. The drug had been in testing for treatment of premenstrual symptoms for years. If the tests had proven it wasn't helpful, the company would have been out of luck.

What worries some critics is that Eli Lilly took Prozac, renamed it "Sarafem," and then repackaged it in lavender and pink capsules. The critics object to this mainly because they felt that women were being misled, that if women knew Sarafem was the same drug as Prozac, they wouldn't take it.

Physicians have made no secret of the fact that Sarafem is fluoxetine and that the drug is available as a generic. Some women request the generic, and other women specifically request Sarafem--not because of successful marketing, but because they don't want to be taking a drug they perceive to be specifically for depression when they don't suffer from depression. As one woman said, "My doctor offered me generic Prozac, but I'd rather have my pharmacist fill a prescription for Sarafem. I live in a small town; I see my pharmacist at the grocery store. I'm not depressed." Another woman said that she gets generic Prozac, "but I tell everyone I'm taking Sarafem. It's just easier. They know what it is and what it's for. It's less explaining I have to do."

Finally, no pharmaceutical company can force a physician to prescribe a medication that does not work, nor can clever advertising brainwash women into thinking they have symptoms if they don't. If a medication works, then it is a valid and important treatment option for women with PMDD, regardless of what name it is sold under.

Question 7: If you start giving out pills to women to make them feel better, won't everyone want to take them?

Most people don't want to take medication. Even when some people are suffering from rather serious diseases, it's tough to get them to take their pills regularly, if at all. Few people will continue to take pills that don't solve the problem. That's why it's so hard to get people to continue to take medication for high blood pressure or cholesterol--these disorders have no symptoms, so it's impossible for the patient to get any indication that the drugs are working.

Selective serotonin reuptake inhibitors (SSRIs) work for many, but not all, women with PMDD. Women will continue to use the drug if the medication relieves their most severe symptoms and helps them feel "normal." But as with just about any medication, there are side effects. Every woman must decide whether the side effects are worth the difference in her monthly moods. Not everyone will decide in favor of the medication.

Women without PMDD will not experience any sense of "feeling better" if they take fluoxetine or most other antidepressant medications (unless they have major depression, anxiety disorder, or other undiagnosed problem). Some drugs--such as Valium, cocaine, or amphetamines--affect anyone who takes them; SSRIs do not. If a well person takes these types of antidepressant medications, they don't get "high." They are not "happy pills" in the sense that many people imagine, and they are not the modern equivalent of "mother's little helper," as Valium was colloquially known. There is virtually no reason anyone would want to take Sarafem if it wasn't needed, and there would be virtually no reason for a physician to prescribe it if there wasn't a problem.

Question 8: If PMDD is real, why is it listed only in the Appendix of the DSM-IV instead of in the body of the text with other "real" disorders?

Premenstrual dysphoric disorder is listed in the Appendix of the fourth edition of the Diagnostic and Statistical Manual of Mental Disorders as a disorder that is in need of additional research. It is categorized as an example of a "depressive disorder not otherwise specified," and is therefore separated from the more familiar depression types, such as major depression or bipolar disorder. Indeed, more research into PMDD was needed back in 1994 when the manual was published. Its listing in the DSM gives a coherent and consistent definition of the disorder, assuring that researchers in Maine and researchers in Mongolia will be using the same criteria for their investigations.

Considerably more research has been done since then, and we now have a body of literature based on these common criteria. No doubt the placement of PMDD in the manual will be discussed when the editors plan for the next revision.

Question 9: I have PMS, and it's not so bad. My friends' PMS is not so bad. Isn't it just that these other women don't know how to handle their periods?

It is difficult for anyone who has not experienced true PMDD to comprehend the emotional and physical pain that can be involved. That's understandable. If you've only had tension headaches, it is going to be impossible for you to truly understand the pain of a migraine headache. Trust us, it's bad for us. We ask not to be judged because of this physiologic disorder. We ask for the understanding and support of the general public and medical community as we continue to search for treatments that allow us to be ourselves all month long.

Meet the Author

Diana L. Dell, M.D., FACOG, is a board-certified in both ob-gyn and psychiatry. She is an assistant professor in both the Department of Psychiatry and Behavioral Sciences and the Department of Obstetrics and Gynecology at Duke University Medical Center. She is past president of the American Medical Women's Association.

Carol Svec is a researcher and award-winning health writer.

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