Most women are familiar with the challenges of PMS. But there’s a form of premenstrual syndrome that’s so extreme, it can make daily life impossible.

It’s called PMDD – premenstrual mood dysphoric disorder – and this severe form of PMS keeps girls and women from being able to function normally. Too many assume they “just have to live with it,” but there is hope, and there is treatment, said Dr. Jennifer Neilsen, an OB-GYN with Novant Health Coastal OB/GYN - Shipyard in Wilmington.

We talked to Neilsen about premenstrual disorders, including PMDD, and what women suffering from the conditions can do.

How common are premenstrual disorders?

Fully 90% of women have some sort of symptoms before they have a period, and about 20% to 30% meet the criteria for premenstrual syndrome (PMS). Somewhere between 2% and 5% of women have PMDD.

How is PMDD diagnosed?

There is not a specific screening or diagnostic test for PMDD. Your gynecologist can determine if you have PMDD by evaluating your symptoms over the course of a year. During most menstrual cycles, you must have five or more symptoms that have been present during the week before your period and stopping within a few days after your period starts.

PMDD symptoms include:

1. Mood disturbance. You’re up and down, irritable, anxious, tense or snappy. You might be suddenly tearful for no apparent reason, or really sensitive to other people’s comments that you’d normally brush off. For some people this manifests more as anger, and they lash out. For some, it’s tearful sadness. You might have conflicts at work or with your spouse or partner. You might say things you later regret. You might feel hopeless, or down on yourself.
2. Lowered interest in your usual activities. Your favorite hobby may suddenly not appeal to you. You could lose interest in interacting with friends. You might be lethargic and have little energy.
3. Concentration problems. You may have trouble focusing or feel a sense of overwhelm.
4. Changes in appetite. This could mean you are eating everything in sight or not wanting to eat at all. For a lot of women, it’s a specific food craving, like carbohydrates.
5. Sleep disturbances. Some people can't sleep, and others want to sleep all the time.
6. Physical changes. These may include breast tenderness or swelling, a sensation of bloating or weight gain.

Again, to have a diagnosis of PMDD, these symptoms need to be occurring for most of the cycles in the preceding year and clinically significant, meaning they interfere with work or school.

It’s important to note that PMDD symptoms are not just an exacerbation of another mental health disorder; they are linked to your menstrual cycle.

PMDD sounds like an extreme version of PMS.

That’s really what it's like — a very extreme version.

Has the diagnosis of PMDD been around for a while, or is it newer? I had never heard of it.

The PMDD diagnosis was formalized in 2013. However, it took a while to be widely recognized.

Is there a genetic component to PMDD?

Yes. Studies show that about 30% to 50% of PMDD cases are hereditary. There are some ethnic groups — Black and Hispanic — where it tends to be more common, although it’s unclear if that’s due to genetics or to more social stressors.

Is PMDD often misdiagnosed? And if so, as what?

It’s not so much misdiagnosed as it is dismissed. Some people are just written off.

Is there treatment for PMDD?

Yes. That’s the hopeful thing. The mainstay of treatment is a class of antidepressant medications called serotonin reuptake inhibitors. These work really well for PMDD. Some people get help from birth control pills. One type with a hormone called drospirenone, a type of progesterone, is approved for this.

Regular exercise helps anybody with some PMS-type symptoms. Regular exercise is helpful for regulating our mood, and getting enough calcium has some benefit for premenstrual disorders. Cognitive behavioral therapy or talk therapy also helps some patients.

If somebody were to go on a serotonin reuptake inhibitor, like Prozac, for PMDD, do they take it every day or just during their period?

You can do it a couple of different ways. You can dose it either cyclically or continuously. You can take it the two weeks before your period. That works for women who don’t want to be on the medication every day. The other option is to take it every day so you don’t have to remember which day you need to start back taking it.

Can girls and women develop PMDD at any point? Or does it come on when you first start menstruating and it's going to last as long as you have your period?

You can develop this later in life, as well as when you first start menstruating.

What if you tell your doctor about your symptoms and aren’t taken seriously?

There are some diagnoses that can take a while to reach. This can be one. My recommendation is to seek a second opinion. Find a provider who will listen. Advocate for yourself; you are worth it!