PMDD: Extreme PMS

Elizabeth Freundel saw seven psychiatrists before doctors found the real cause of her mental torment - her hormones
By Sian Thatcher

The therapist shook her head. "I have no idea what's wrong with you," she says. For Elizabeth Freundel, these words came as no surprise. During the past six years, she had seen seven psychiatrists - each one conjuring up wildly different diagnoses. According to one she was bipolar, while another said she was epileptic. She had taken a full spectrum of psychiatric drugs - three years on lithium, one year on Seroxat, mixed in with a potent cocktail of anticonvulsants, Valium and more. She was having around five panic attacks a day and was severely depressed - and no one had any idea what was wrong with her. She had endured this for almost 15 years and hope of finding a solution was beginning to fade.

Elizabeth's problems started aged 12. She morphed from an adventurous and friendly child into a surly, withdrawn teenager. She would oscillate from feeling depressed and anxious to being herself again every month, but she suffered mostly in silence, assuming that this was the norm. "I felt exhausted and confused from this rollercoaster of emotions," she says. "I tried to keep it all inside, just raging internally instead.

"When I was 18, I started getting deeply depressed on a cyclical basis and also had an upset stomach, bad period pains and felt exceptionally lethargic. I felt like I had some sort of muscle-wasting disease. My weight went down to just under eight stone and I'm five foot nine, so I was quite skinny." She went to the doctor about her period pain and was given painkillers, but she never thought her problems could be related.

By the time she went to Cambridge University, her condition became unmanageable and she started to "go a wee bit nuts". She was fine for two weeks a month, but the rest of the time suffered panic attacks and was unable to work. "When I was low, I would spend 16 hours a day hiding under duvets sobbing to myself," she says. "But as soon as my period started, I was like, 'let's go partying' - it was that delineated." Her work was suffering, so she started to see a psychiatrist in her second year and was diagnosed with bipolar disorder and put on a course of lithium, which had no effect.

After university, she went to work for an auction house. She enjoyed her job and was ambitious, but by the time she left, she suffered even more frequent panic attacks, bouts of irritable bowel syndrome and menstruated all the time.

It was at this stage that her latest psychiatrist told her there was nothing they could do. Elizabeth, then 27, felt she was just a "non-functioning human being". To try to solve her menstrual problems at least, she Googled "Harley Street" and "gynaecologist" and came across Professor John Studd. "I made an appointment and after I mentioned a few symptoms, he stopped me and said, 'I know exactly what's wrong with you, and it's PMS [premenstrual syndrome]'. I just thought, 'You're the maddest man in Maddsville'."

He prescribed injections that shut down her ovaries, so she has no hormonal cycle. She has oestrogen and testosterone implants in her abdomen and has to have bone density scans every year to make sure she isn't developing osteoporosis, but says she feels good. "The treatment worked pretty much immediately. I'm so grateful to Dr Studd," says Elizabeth, now 30. "I'm a completely different person. I went from being a weepy, crazy, needy individual to being absolutely fine. I'm angry because I've wasted so much time being sick and if I'd know this so many years ago, I could have fixed it."

While Elizabeth's story is extreme, this severe form of PMS is very prevalent. Nicholas Panay, the chairman of the National Association for Premenstrual Syndrome (Naps) and consultant gynaecologist, suggests that up to 10 per cent of women in this country suffer from this illness, but that few people realise it exists. "It's a serious condition," he says. "The difficulty is that PMS symptoms are common. A lot of people have mild PMS, but there is a group who have severe symptoms that can make lives a misery." Indeed, what these women are dealing with is not PMS but Premenstrual Dysphoric Disorder (PMDD).

No one knows exactly what causes PMDD, but it seems to be linked to ovarian activity. "We know that it's a cyclical phenomenon, probably caused by fluctuations in hormone levels, which have a reciprocal effect on the chemical messengers in the brain," says Dr Panay.

Women who are more sensitive to their changing hormone levels may experience symptoms such as depression, mood swings, uncontrollable rage, inability to cope and anxiety attacks. Fluid retention, breast tenderness, bloating and migraines are also common. Taken to its extreme, there have been recorded cases of suicide and one woman was acquitted of murder on the grounds of "temporary insanity from suppression of the menses". "I've been involved with cases of children being taken away from mothers because of PMDD," says Dr Panay. "And then after appropriate treatment, the children have been returned, as she's no longer a danger."

While it can affect women in their teens and twenties, symptoms tend to be milder and it's not usually until their early thirties or after the birth of a first or second child that they seek help for it. And because symptoms vary, it is often misdiagnosed. Dr Panay estimates that between 25 and 50 per cent of the women he sees in his specialist PMDD clinic have been misdiagnosed with mental disorders, ranging from bipolar and depression to anxiety problems. Indeed, he says, GPs have not been trained to deal with this condition.

Thousands of women are told there is no treatment for this, when there are many ways to make symptoms bearable. "The first course of action is to minimise stress in your life, make sure you've got an optimal diet and exercise regularly," says Dr Panay. "Cutting out or reducing alcohol, caffeine and chocolate is important, as these exacerbate symptoms. Evening primrose is effective, but only to combat breast tenderness and fluid retention. Vitamin B6, calcium, vitamin D and Agnus Castus have been shown to be of benefit in easing mild to moderate PMS."

For women with PMDD, further intervention is needed in the shape of hormone therapy or antidepressants. "Cipramil (Celexa) and Cipralex (Lexapro) are the best antidepressants for this," says Dr Panay. Other women prefer to go down the hormone-therapy route and the simplest treatment is the Pill, which provides a constant hormonal environment, but it must be used without a seven-day break. If the Pill doesn't work, then the next step is oestrogen patches, which are 70 to 80 per cent effective. A more successful treatment, again, is the one Elizabeth uses - a monthly injection that suppresses the cycle, mimicking the menopause.

"The only complete cure is either the menopause or the removal of the ovaries," says Dr Panay. "Obviously, that's not feasible in the majority of women and we don't advocate that as a first line, but there are one or two women a year who will resort to hysterectomy."

Naps is campaigning for better awareness of this condition. Its website ( attracts thousands of people, and the forums and helpline are a particular source of comfort. For many women, just finding that they're not alone is a relief. But Naps only has under one year left before it runs out of funds, and it islooking for sponsors to keep the society running.

"PMDD may not kill you," says Dr Panay. "But longevity means nothing without quality of life."

PMDD: the symptoms

The physical symptoms are the same for PMS and PMDD, and while the emotional symptoms are similar, they are much more severe for PMDD. For example, mild depression is not uncommon with PMS, but with PMDD, women may experience significant depression to the point of contemplating suicide.

If you have severe panic attacks, bouts of anger, irritability or depression before your period that affect your relationships at home and in work, you may have PMDD.

The best way to confirm this is to keep a symptom diary, and record the severity and timing of symptoms. If the symptoms occur throughout the cycle, it's unlikely to be PMDD.

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PMDD: Fact or Fiction

"PMS, PMDD, or whatever label you put on it, is, has been, and probably always will be one big excuse for being grumpy and nasty," posts Marianne E. A faceless Internet user posting her thoughts on a web forum, Marianne shares an opinion with many other Americans. Many people, mostly men, feel that female sexual disorders exist purely as a defense for a bad mood. A handful of women and a few members of the medical community might agree with Marianne. However, a significant amount of research and medical opinion contradicts Marianne's assertation. As many women can attest, PMDD, or Premenstrual Dysphoric Disorder, can be a fact of life.

It is estimated that 70-90% of women will experience some form of premenstrual grief at some point during their fertile years. Of those women, between 30-40% of women can be diagnosed as having Premenstrual Syndrome. Narrowing the field even more, 3-7% of those women have Premenstrual Dysphoric Disorder.

In general terms, PMDD can be considered a severe form of Premenstrual Syndrome, or PMS. Because the two disorders share many of the same symptoms, a problem results in distinguishing between the two. A simple answer exists in terms of severity: a woman with PMDD experiences the same ailments as a woman with PMS, only the woman with PMDD suffers to a far greater degree. The medical community has attempted to provide clinical descriptions to help specify these disorders. A PMDD website maintained by the drug company Lilly describes PMDD as a combination of psychological and physical effects occurring from one to two weeks before a woman begins her period. Furthermore, all of the symptoms associated with the onset of a woman's period can be separated into three categories: PMD, or Premenstrual Discomfort; PMS, or Premenstrual Syndrome; and PMDD, or Premenstrual Dysphoric Disorder. The most common symptoms associated with Premenstrual Discomfort consist of physical changes: bloating, weight gain, acne, dizziness, headaches, breast tenderness, cramping, backaches, food craving, and fatigue. Those symptoms associated with Premenstrual Syndrome tend to be more psychological changes: sudden mood swings, unexplained crying, irritability, forgetfulness, decreased concentration, and emotional over-responsiveness. Premenstrual Dysphoric Disorder consists of symptoms more commonly associated with chronic depression: sad, anxious, or empty moods; feelings of pessimism or hopelessness; emotions such as guilt or worthlessness; insomnia; oversleeping; change in appetite, resulting in weight gain or loss; suicidal thoughts/attempts; uncontrollable rage or anger; lack of self control; denial; anxiety; and frequent tearfulness.

PMDD is often confused not only with PMS, but also with depression. As previously mentioned the PMDD symptoms must exist in such severity as to inhibit the woman's day to day living, to separate the disorder from PMS. PMDD affects a woman's work environment, personal relationships and family life. What separates PMDD from depression is a sudden disappearance of most symptoms shortly after a woman's period begins. To further complicate matters, if PMDD is left untreated for several years, the symptoms may override the menstrual cycle, occurring during ovulation or at any time during the cycle.

Because PMDD shares symptoms similar to many other disorders, debate exists over where to classify PMDD. The fourth edition of the Diagnostic and Statistical Manual for Mental Disorders (DSM-IV) lists PMDD in its index, calling it a depressive disorder. However, lack of information and understanding of exactly how PMDD works prevents it from being classified in an official mental illness category. Basic research links the onset of PMDD to neurological and hormonal differences in some women's bodies. A study completed by the National Institute of Mental Health linked PMS with abnormal levels of estrogen and progesterone. In the article introducing the study as it was published in the New England Journal of Medicine, Dr. Joseph Mortola wrote, "premenstrual syndrome is probably the result of complex interaction between ovarian steroids and central neurotransmitters,". A Psychiatric News bulletin describes how PMDD specifically works, "in a press release on the advisory committee's recommendation, Lilly said that although the etiology of PMDD is not clearly established, it "could be caused by an abnormal biochemical response to normal hormonal changes." Routine changes in estrogen and progesterone associated with menses may, in vulnerable women, induce a serotonin deficiency that could trigger the symptoms of PMDD.".

Some women's bodies cannot effectively handle the hormonal shifts that occur every week in a menstrual cycle. Lilley suggest that these women lack the level of serotonin, a neurotransmitter, needed to make smooth hormonal and emotional transitions from week to week. Several antidepressants have had the most successful results in terms of strong effects on serotonin levels -- the medical community has dubbed these drugs as SSRIs, or Selective Serotonin Reuptake Inhibitor. The FDA has only approved two SSRIs in the treatment of PMDD: Sarafem and Prozac. These two drugs contain Fluoxetine, which is thought to correct the serotonin imbalance in women who experience PMDD.

Three options exist for treatment of PMDD. Doctors may choose to take a medicinal approach, administering antidepressants, antianxiety drugs or hormones. Health care providers may also try focusing on the psychobehavioral aspects of the disorder. This includes stress management, psychotherapy, and relaxation. The third option is a nutritional modification, including dietary restrictions, extra vitamins, rigorous exercise, and herbal remedies. Women are encouraged to speak to her gynecologist to find the most appropriate method of treating her PMDD.

Many factors contribute to the reason why PMDD is regarded as a controversial topic. Little is known about the disorder: the American Psychiatric Association has not formally accepted PMDD as a mental illness; PMDD is listed merely as a disorder. Many doctors have found homeopathic remedies are most effective, thereby decreasing the validity of Fluoxetine drugs. Furthermore, since such a small percentage of women suffer from PMDD, it is entirely possible never to hear a personal experience. After hearing just one woman's story, it becomes that much more difficult to doubt the legitimacy behind her experience. With continued research, the medical field may be able to separate the divide between those who see PMDD as fact and those who see PMDD as fiction.

Drug Firms Treat PMS As a Mental Disorder

IS SEVERE PMS, or premenstrual syndrome, a mental illness? Some pharmaceutical companies and psychiatrists are treating it as one. In new television ads, drug maker Eli Lilly is promoting the drug Sarafem to treat the problem, now dubbed Premenstrual Dysphoric Disorder (PMDD). But the pink and purple pills aren't a new drug -- they are simply repackaged Prozac, the popular antidepressant.

Makers of similar antidepressants, known as serotonin reuptake inhibitors, or SSRIs, also may follow suit. In January, Pfizer asked the FDA to approve Zoloft to treat PMDD. Forest Laboratories' Celexa and GlaxoSmithKline's Paxil also have been studied.

The medical community, however, remains divided about whether PMDD is a real disorder or simply a way for drug companies to cast a wider net in search of new customers. Critics are particularly concerned about labeling women as mentally ill because of problems associated with menstrual cycles.

"When you start calling what PMS is a psychiatric disorder, what are you saying about the women of this world?" says Nada Stotland, director of psychiatric education at the Advocate Illinois Masonic Medical Center in Chicago. "This lends itself to prejudices people already have about women being moody and unreliable."

ALTHOUGH THE FDA has approved Sarafem to treat PMDD, the psychiatric community is still debating the legitimacy of the disorder. The American Psychiatric Association includes PMDD in the appendix of its current Diagnostic and Statistical Manual of Mental Disorders, the part of the manual reserved for issues needing further research before being officially accepted as a mental illness.
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Fueling skepticism about PMDD and Sarafem is the fact that in August, Lilly, based in Indianapolis, loses patent protection on Prozac, a drug with $2.6 billion in sales last year, according to IMS Health. With Sarafem, the firm now has a separate patent to use the drug for PMDD through 2007, allowing it to partially offset losses in sales as rivals produce generic Prozac.

Repacking prescription drugs for other uses is becoming more common. Glaxo, for example, has repackaged its antidepressant Wellbutrin as the stop-smoking aid Zyban.

Many physicians argue that PMDD is a legitimate mental illness triggered by normal hormonal fluctuations in a woman's menstrual cycle. About 3% to 5% of menstruating women are affected. "This is a subset of women who have really, really severe mood changes and changes in their behavior," says Jean Endicott, professor of clinical psychology at Columbia University's College of Physicians and Surgeons. "It can be very debilitating."

Unlike other mental illnesses that affect a patient on a daily basis, PMDD is said to affect women during the week to two weeks before their period. The symptoms include depression, anxiety, tension, anger, irritability and the feeling of being overwhelmed or out of control. Other symptoms also are typical of traditional PMS, such as breast tenderness, headache, bloating and weight gain.

In order to be diagnosed with PMDD, a patient must have at least five symptoms, including one involving mood change, and be markedly impaired as a result. Patients should track symptoms for two months before a diagnosis is made.

About 60% of women who take Sarafem for PMDD will be helped, according to Dr. Endicott. Currently, the drug is taken every day, but researchers are studying dosing that would reduce the pills to several days a month, limiting side effects, which can include tiredness, upset stomach, nervousness, dizziness and difficulty concentrating.

A 38-YEAR-OLD Chicago flight attendant named Betsy, who didn't want her full name used, says the week before her period she felt like an "over-wound spring, getting wound tighter and tighter," and would often scream and lose control. "That's not my normal disposition," she says. "I knew something wasn't right."

She noticed the correlation with her menstrual cycle and discussed her problems with her gynecologist, who prescribed Sarafem. "It has completely taken away the symptoms," she says.

Dr. Stotland and other critics, however, worry that eager patients may push to be prescribed Sarafem as a quick fix, preventing doctors from diagnosing other serious health problems. Dr. Stotland says research has shown that more than half of the women who believe they have severe PMS actually suffer from other problems, such as depression, panic disorder or even domestic violence.

Lilly's marketing of Sarafem also has sparked controversy. The first ads showed a frustrated woman wrestling with a shopping cart. "Think it's PMS? It could be PMDD," the ads said. But the FDA said the ads trivialized the seriousness of PMDD, and the campaign was pulled. New ads show one woman arguing with her husband and another frustrated because she can't button her pants.

Lilly spokeswoman Laura Miller says the ads attempt to show the full gamut of PMDD symptoms. "It's up to the doctor and the woman to determine whether she has PMDD and whether treatment is appropriate," she says.

But Paula Caplan, a psychologist and affiliated scholar at Brown University's Pembroke Center for Research and Teaching on Women, says instead of labeling women as mentally ill, physicians should urge diet changes, exercise, less caffeine and even calcium supplements. "But nobody makes much money off calcium tablets," she adds.