What your doctor may not have told you about your PMS

Premenstrual dysphoric disorder, or PMDD, is a relatively common and treatable illness affecting about 5% to 8% of people who menstruate. But for many, the road to a diagnosis and treatment can be fraught. PMDD is a severe form of premenstrual syndrome that causes depression, irritability and anxiety in the weeks leading up to menstruation and for decades, many physicians denied that it was even real.

After years of struggling to get answers, local writer Shalene Gupta learned that she had PMDD and has written a book that dives into this hidden epidemic called “The Cycle: Confronting the Pain of Periods and PMDD.” She spoke about the book with GBH's All Things Considered host Arun Rath. What follows is a lightly edited transcript.

Arun Rath: So you delve deeply in this book, a lot of research, talking with patients, researchers and clinicians to learn more about PMDD, but you also talk about your own experience with it. Could you start off there because you had a hard experience in terms of getting to an understanding of what was going on with you — which sounds like it's fairly common?

Shalene Gupta: So for a long time, I just thought I was a really bad person because every month, like clockwork, I would have a breakdown. Either I would just fall into a depression and it felt like life wasn't necessarily worth living, or I was horribly anxious to the point where it would be hard to to get dressed and figure out how to go about my day. The worst part is, I would get really, really angry and I would have a horrible fight with my partner. There'd be screaming. It was terrible, and it would be really hard to respect myself.

It got to the point where I could sit my boyfriend down, point to a calendar and say, "On this date, we're going to fight." And it was always one or two days before my period. And we knew this was going to happen, and we actually would sit down and try to figure out. Like, what can we do? Are there issues that we need to thrash out?

We both went to therapy. Nothing worked. I tried yoga, meditation, running. At some point, I even read the Bible out of hopes that something would click — and I'm not a Christian. But these breakdowns just kept happening.

During the pandemic, as external stimuli began to go away, it became very clear that there was an issue with me. This wasn't a hard day at work. This wasn't an issue with a friend. This wasn't stress. Something was going on. And that's when I called my doctor.

Rath: And talk about it from there. How is this distinct from premenstrual syndrome?

Gupta: So, historically, PMS and PMDD have been conflated, which is why we don't actually hear about PMDD that much. PMS refers to your garden variety — a little bit of irritation, some grumpiness, maybe some pain and anxiety — before your period. PMDD is severe. It's to the point where it's difficult to live your life. So the actual definition involves having 5 out of 11 symptoms and having them to the point that it's interfering with your work, or your education, or your relationships.

Rath: And that process that you had with your doctor, talk about that. I know if you're struggling for a diagnosis, when you find a doctor who figures it out, it's almost like a euphoric moment.

Gupta: It was an incredible moment. What actually ended up happening is I had a terrible fight with my partner, who's now my husband, and he is the most patient man alive. He actually said, "I don't know if I can be with you anymore if this keeps happening." And I went to the bathroom, I threw up and I just thought, "What am I going to do? I can't have my relationship fall apart" — because I had gone through a severe breakup because of PMDD once before.

So I Googled "anger before your period" and I came upon PMDD and I thought, "Oh my God, that's me." It was a light bulb moment and I called my doctor and I told her my entire history, and I told her about PMDD, and she just said, "Oh my God, you sound like a really wonderful person. I can't believe you've been suffering like this for over a decade."

It was such a beautiful moment because I thought she was going to say I was crazy. I thought she was going to confirm all my fears that I was really a terrible person, or that she was going to have me committed. She did none of those things. She said, "How can I help you? Let's get you some treatment."

Rath: And what does treatment involve?

Gupta: It varies for different people because it turns out there are actually different subtypes of PMDD, but researchers haven't quite figured out what subtype responds to what kind of treatment. So first-line treatments are either birth control or antidepressants. Then if your PMDD doesn't respond to that, which for 10% of people it won't, then there's more intensive options — like suppressing ovulation, so that you don't have a cycle, or ultimately getting a hysterectomy and getting your ovaries removed.

In my case, it was a year of trying different birth controls before finally trying an antidepressant, and that worked beautifully for me. The tragedy is, with PMDD, antidepressants work in as quickly as 12 hours. For anxiety or depression, it takes four to six weeks for an antidepressant to kick in.

Rath: Wow. That's pretty amazing. So how is that that week of the month now, compared to the way it was for you before?

Gupta: It's night and day. I struggle at times to explain how big of a difference it is because so much of the struggling I did was private and hidden. So externally, I feel like a lot of people in my life aren't seeing much of a difference because I wasn't necessarily telling, "I had this terrible fight with my partner." But my partner and I have gone from having a devastating fight once a month to essentially not fighting.

I still struggle a little bit with lethargy, a little bit of depression, a little bit of anxiety — but it's manageable. It no longer feels like my life is falling apart.

Rath: For this book, what was it like for you, and what did you learn from interviewing other patients and connecting with them?

Gupta: Writing this book was actually this process of self-healing. I feel like that sounds really corny, but for a long time I really believed that I was alone in this. Then I found out it's a diagnosis and other people have this.

As I was writing this book, I went and I interviewed a bunch of people who have this — or their families and friends have this — and I would just hear the same story again and again. Anger right before their period, rage, shame, and then the shame and the guilt and vowing, "I'm going to do a better job next month. I'll have a better handle on myself." And trying everything.

I talked to a couple of people who just self-isolated and actually just spent a week alone because the rage would be so terrible. Overwhelmingly, there was just the sense of: Why did we never hear about this before? Why did this have to become a shame that we internalized and felt like we were terrible people when actually we were sick and we needed treatment?

Rath: You live around Boston and you acknowledge the fortune of that — of being in a place where there are so many great medical professionals. But for people out there who might be experiencing this, who may not have access to those kind of doctors, are there resources out there?

Gupta: For anyone who suspects they're going through something like this, I highly recommend going to IAPMD.org. It is the website for the International Association for Premenstrual Disorders. They have a ton of information, including a symptom tracker, a diagnosis self quiz, as well as just fact sheets of what it is, what are treatment options and they have a giant community as well.

Rath: Shalene, it's been great talking with you. Thank you so much.

Gupta: Thanks so much for having me, Arun.

“The Cycle: Confronting the Pain of Periods and PMDD” is out on Tuesday, Feb. 27. You can catch Shalene Gupta in conversation about “The Cycle” on Tuesday at 7 p.m. at Porter Square Books in Boston, virtually or in person.