Premenstrual dysphoria disorder: It's biology, not a behavior choice

Almost all women have some mild premenstrual symptoms that signal the imminent arrival of their period every month. These symptoms are typically just an annoyance and don't cause any distress.

But for some women, these symptoms are much more significant. About 20% of menstruating women suffer from premenstrual syndrome, or PMS. Women with PMS have mostly physical symptoms and some minor mood disturbances caused by the changing hormone levels in the second half (or luteal phase) of the menstrual cycle. These hormone-induced symptoms can cause significant physical distress in the days leading up to menstruation.

PMDD: More than PMS

Sometimes — in about 5% to 8% of menstruating women — debilitating mood changes accompany these premenstrual physical symptoms. Globally this is often referred to as severe PMS, but in the United States this combination of physical symptoms and mood disturbances is called premenstrual dysphoria disorder, or PMDD.

Unfortunately, women with PMDD are often misdiagnosed. Sometimes they go undiagnosed, being told they are just hormonal and need to get over it. And sometimes they are overdiagnosed. Unfortunately, it is all too common for women with PMDD to be incorrectly diagnosed with bipolar disorder.

What causes PMDD?

Broadly speaking, if you have PMDD, you have an increased sensitivity to your reproductive hormones during the two weeks before your period starts. This sensitivity leads to alterations in the brain chemicals and neurologic pathways that control your mood and your general sense of well-being. Exactly what that sensitivity is and what causes it has not been well understood. And treatment options have been limited.

Fortunately, progress is being made with some exciting new discoveries. Researchers at the National Institutes of Health (NIH) have found that women with PMDD have an altered gene complex that processes the body's response to hormones and stressors. This is a very important discovery, as it establishes a biological basis for the mood disturbances of PMDD. Not only is this validation for women who live with PMDD, but it also has tremendous implications for new and improved treatment options.

And more recently, Dr. Peter Schmidt, one of the lead researchers on the NIH study, published data that support the working theory that it is the changes in hormone levels, not just the hormones themselves, that trigger the symptoms of PMDD.

Getting the diagnosis right

There are no tests to diagnose PMDD. The diagnosis is made entirely on the type and timing of symptoms.

To make the diagnosis of PMDD, symptoms must be present only in the week or two before your period, and they must subside within a few days of starting your period as quickly as they come on. The type of symptoms are also important. Specifically, to meet the criteria for PMDD you must experience at least one of the following:

• feeling very irritable or angry
• feeling very down or depressed
• feeling very anxious, stressed, or tense
• avoiding your usual activities

In addition to these four core mood symptoms, any one of the following symptoms (to make a total of five) are needed to confirm PMDD:

• difficulty concentrating
• feeling tired and very low in energy level
• binge eating or having a really strong, specific food craving
• sleeping too much or having trouble falling asleep
• feeling overwhelmed or out of control
• unpleasant physical symptoms, especially breast tenderness, bloating, body aches, and weight gain

If you experience any of these symptoms apart from the two weeks before your period, you don't have PMDD. Instead, it is likely that you have another underlying mood disorder. With the other mood disorders like major depression, bipolar disorder, and generalized anxiety disorder, you may have good days and bad days with your symptoms but they are not predictable. Your symptoms will occur randomly throughout the month, not just in the two weeks before your period. You may, however, notice an increase in symptoms before your period. This is known as a premenstrual exacerbation. It is very important to get the diagnosis right because the treatments are often very different for PMDD from the other mood disorders.

5 things you should do if you think you have PMDD

1. Track your symptoms. This is essential to getting the right diagnosis. You should record how you are feeling every day for at least two cycles, making note of the days you bleed. Try using a period tracker app like Clue to help you collect this information.
2. Educate yourself. It is important for you to understand as much as you can about PMDD. Unfortunately, much of the medical profession is undereducated about PMDD. You will need to be an advocate for your health. You can look to the Gia Allemand Foundation and the Center for Women's Mental Health at Massachusetts General Hospital for information and guidance.
3. Reach out to peer support groups. Remember, you are not alone. It is important to connect with others who have PMDD. Hearing other women's stories and struggles can help you cope with your diagnosis. Try PMDD Moms or PMDD Safehouse.
4. Start with lifestyle changes. The first step in managing the symptoms of PMDD starts with improving your overall health and wellness. Eating a well-balanced diet, getting regular exercise, and adequate sleep are essential. Consider introducing some mind-body practice like yoga or meditation to help manage stress.
5. Talk to your doctor. It is very important that you discuss your symptoms and concerns with your doctor. Consider tracking your symptoms before your visit. If you don't feel that your doctor is taking your complaints seriously, you should not hesitate to get another opinion. Do not give up until you get the help you deserve.