7 Questions About PMDD, Answered By An Expert
When I was diagnosed with Premenstrual Dysphoric Disorder (PMDD), I had a million questions. Why do medications work for some people and not others? What’s the cause of PMDD? Why do psychotropic medications help with physical symptoms? Then, because I’m a perpetually curious person, I did a deep dive researching them. And I quickly realized that the answers were more complicated than I expected.
But before we get into the questions, let’s talk briefly about what PMDD is. Most people are familiar with premenstrual syndrome (PMS), but PMDD is less common and therefore fewer people know what it is. As a shorthand, I’ve been describing it as “PMS with suicidal ideation,” but suicidal ideation is the extreme. More accurately, PMDD is all of the symptoms that can come with PMS — irritability, bloating, breast pain, anxiety, depression, fatigue, etc. — turned up to 11. To be diagnosed with PMDD, the symptoms have to interfere with your life (like you can’t go to work or it's negatively affecting your relationships) for at least two months.
"PMDD is a cyclical hormone based mood disorder," PMDD expert Andrea Chisholm, MD, tells Bustle. "The symptoms present during the luteal phase of a woman's menstrual cycle. In the luteal phase or second half of every woman's normal menstrual cycle there is a significant increase in progesterone and a relative drop in estrogen. These hormones are neuroactive, meaning that they cross into the brain and they can influence brain chemistry. For some woman who are especially sensitive to these hormone changes, significant mood effects can occur."
For me, PMDD manifests as extreme physical symptoms and serious anxiety, paranoia, fatigue, and depression. I was convinced that my partner was cheating on me; that everyone in my coworking space hated me; that my family didn’t want me around. I understood, for the first time, why people commit suicide. I also swelled up from my ankles to my face, going up two cup sizes and having to wear completely different pants for five to 10 days a month. I cried continuously. I couldn’t get off my couch. I’d ask my boyfriend to lie down on top of me to suppress my central nervous system. And then, almost as soon as my period started, I was back to being a fully functioning human.
When I found a Harvard article about PMDD and how SSRIs (commonly called anti-depressants) are effective at treating it for many women, I felt hope for the first time in months. My family has a very serious history with mood disorders — including bipolar disorder, major depression, and suicide — but I hadn’t considered the idea that what was going on with me was that. Because it’s linked to my menstrual cycle, I assumed it was a hormone imbalance. But when I found out it could be related to serotonin, it suddenly made sense why none of the other things I’d tried had worked.
But I still had questions. And I’m sure that other people who are starting this process have a million questions, too. So with that in mind, here are seven questions about PMDD, answered.
1. Is PMDD A Serotonin Disorder?
One of the frustrating things that you learn pretty quickly about PMDD is that medical professionals aren't quite sure what causes it.
"It is currently thought that the relative drop in estrogen can negatively impact the serotonergic system in the brain," Dr. Chisholm says. "Serotonin imbalance can result in significant depressed mood. So, yes, for some woman PMDD is a serotonin disorder and treating with SSRIs can have excellent results. For other women — especially those who experience more of an agitated anxiety in their luteal phase — the significant increase in progesterone may be more responsible for their symptoms and SSRI may not be as effective."
So for me, PMDD is a serotonin disorder. But for other women, like Amanda LaFleur, the cofounder of the International Association of Premenstrual Disorders (IAPMD), it's hormonal.
And there are different treatments, based on the root cause. For women with a serotonin-based disorder, SSRIs can be really effective. For women with a hormonally-based disorder, cycle suppression (usually meaning continuous hormonal birth control) may work. And in the extreme, some women choose to have hysterectomies in order to become symptom-free.
2. Will The Transitions Going On And Off The Medication Get Better Over Time?
When I was prescribed fluoxetine (sold under the brand name Prozac), my doctor suggested I try "luteal cycling" first. That means I take a relatively lose dosage (20 mg) of the medication for the last two weeks of my cycle. But the first couple of months, the transitions on and off were fairly disruptive. I wanted to know: Would they get better?
In my experience so far, they definitely have gotten better. The disruptions are minor enough after three months that I can tolerate switching, and I like not having the side effects (which are mainly slight sexual ones) during the two weeks I don't take it.
But if you're trying luteal cycling and the side effects don't get better, Dr. Chisholm recommends taking it every day instead. Studies have shown that both are effective treatments.
3. If Someone Doesn’t Have A Serotonin Imbalance, What Happens When They Take An SSRI?
When I started on the medication, the effects were immediate. I felt like the color had been turned up to 11 on the entire world. I was euphoric, both from the alleviation of syndromes and also because my brain was flooded with a whole bunch of serotonin. But it made me wonder: What happens to people who take SSRIs if they don't have a serotonin disorder?
"Nothing bad will happen to you, but you certainly will not feel any better on an SSRI," Dr. Chisholm says, "And you may perhaps experience more of the side effects."
So if you take the SSRIs and there are effects, it's likely your PMDD is serotonin-based. But if you take it and there are no effects, it might be a good idea to try a hormonal solution.
4. Are There Advantages To Luteal Cycling Over Taking The Medication Every Day?
When I was presented with the option of luteal cycling or taking the medication continuously, I had no idea what the benefits were of one over the other. Dr. Chisholm says "with PMDD your symptoms are only in the luteal phase, you don't need the therapeutic effect of an SSRI the other roughly 14 days of the month, and you may experience negative side effects during those two weeks."
However, Dr. Chisholm and LaFleur introduced me to another, similar condition called Premenstrual Exacerbation disorder (PME). In women with PME, the two weeks before their period look very similar to those of women with PMDD. The difference is that PME is an exacerbation of a previous disorder, meaning those women have an anxiety disorder or a depressive disorder or some other mood disorder that gets significantly worse during the luteal phase of their cycle. "For those woman who have previously unrecognized mood issues outside of the luteal phase, taking an SSRI daily all month long may be a better idea," Dr. Chisholm says.
5. What Are Some Other Treatment Options For People With PMDD?
SSRIs are just one treatment option for PMDD. They're the one that's worked best for me, but it may take a little bit of experimenting for each woman to find the best fit. Dr. Chisholm says that the "first line treatment should consist of lifestyle modifications." That includes eating well, a good exercise routine, a mind/body practice (like meditation or yoga), and supplements. She recommends calcium, vitamin D3, vitamin B6, and chaste berry.
Another option is cycle suppression, which means you're suppressing the hormones that are released during your menstrual cycle. People usually do this by taking hormonal birth control (like the Pill) continuously. And some women, including LaFleur, eventually decide to have a hysterectomy if no other treatments work for them.
6. Why Do SSRIs Work So Quickly For PMDD, Compared With Depression?
One question that kept coming up, including from my family members who have been on SSRIs for years, is why they start working so quickly for PMDD. With depression, the doctor usually warns people that the medication will probably take a few weeks before becoming effective. But with PMDD, people usually see results immediately. I know, for example, that's what happened for me.
I asked Dr. Chisholm why this is and her answer was refreshingly honest. "I don't know the answer to this," she says. "I'm not sure we know."
7. Where Can I Find More Resources?
If you want to learn more about PMDD, a great place to start is the IAPMD, which provides peer support for people suffering from this illness.
I also can't recommend the Harvard article that helped me figure out my diagnosis enough. It's called “Treating premenstrual dysphoric disorder" and it lays everything out so clearly.
And then, go to your health care provider. Come in with a list of questions and don't take "I don't know" for an answer. Do your own research. Advocate for yourself. And know that you can get through this.