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Brigid Bergin: It's the Brian Lehrer Show on WNYC. Welcome back, everybody. I'm Brigid Bergin from the WNYC and Gothamist newsroom. If you are someone who menstruates or who used to menstruate, then you probably know all too well that the bleeding while inconvenient and unpleasant is often the least disruptive part of the cycle. PMS, which stands for premenstrual syndrome, can cause physical and psychological symptoms in the week or two leading up to the period itself. It can come with serious pain, including soreness, cramps, sciatica, bloating, irritability, mood swings, depression.

For those who have premenstrual dysphoric disorder, also known as PMDD, these symptoms can be so disruptive that they interfere with relationships, with work, and can even lead to suicidal ideation or attempts. Listeners, just so you're aware, we'll be talking more about mental health, suicide, and self-harm in this segment, so please use discretion.

With me now is Dr. Tory Eisenlohr-Moul, Assistant Professor of Psychiatry and Psychology at the University of Illinois at Chicago and Clinical Advisory Board Chair at the International Association for Premenstrual Disorders. She is the lead author of a recent study published in BMC Psychiatry that found that 34% of people with PMDD have attempted suicide and 70% experienced [unintelligible 00:01:36] suicidal ideation in addition to other findings. Dr. Eisenlohr-Moul, thank you so much for joining us.

Dr. Tory Eisenlohr-Moul: Thank you so much for having me in talking about this issue.

Brigid Bergin: First of all, can you give our listeners a breakdown of what PMDD is exactly? Just how common is it?

Dr. Eisenlohr-Moul: Absolutely. PMDD or premenstrual dysphoric disorder, as you said, it's a hormone-sensitive brain disorder in which the normal hormone fluctuations across the menstrual cycle trigger severe emotional symptoms. Things like depression, anxiety or panic, intense anger or irritability. We see that in the two weeks before the onset of menstrual bleeding. It looks like it affects about 5% or 1 in 20 people with menstrual cycles.

Interestingly, well, these hormone-related emotional changes in people with PMDD, of course, can be extremely debilitating, as you said. We also see, interestingly, that in the rest of the population, there's actually very little, if any, evidence of this emotional PMS that people talk about. In other words, it seems like this idea that all females have PMS is kind of a myth, but there is a subset of people-- Of course, there's kind of a gradient there. There's a subset of people with PMDD who have extremely severe emotional PMS that really needs diagnosis and treatment. We don't need any more sitcom episodes about PMS, we need to be talking about this serious medical disorder of PMDD.

Brigid Bergin: Well, so let's talk about your recent study in BMC Psychiatry, and it's groundbreaking due to its breadth and methodology. Can you talk a bit about how you and your team gathered this data?

Dr. Eisenlohr-Moul: Absolutely. One of the cool things about this study is that we partnered with patient advocates at the International Association for Premenstrual Disorders or IAPMD, which is a nonprofit that I work with in this area. Because of that, we've really integrated the patient experience into it, but we also paid attention to things like making sure that the participants that we looked at had a diagnosis based on daily charting of symptoms across the cycle in large part because of that PMS myth, we do see a lot of people who think that they have emotional PMS, but then when they chart their symptoms, we don't actually see any pattern.

Perhaps their boyfriend told them that they had it or something like this, but we actually don't see it. When we really cast a wide net, collected surveys online globally from about 3,000 people, we then selected the 600 people who reported having a diagnosis of PMDD using this gold standard method of charting symptoms daily across the cycle. Then we asked them about their histories of suicidal thoughts and behaviors across their lifetime as well as asking about whether they'd ever received any other psychiatric diagnoses.

As you mentioned, we found that 34% of those folks had made a suicide attempt, which is quite high and in the range of what we would expect for someone with quite chronic major depressive disorder, for example. We also found that 72% of these folks had experienced thoughts about killing themselves at some point in their life. Then even among those, we kind of broke it down by those who had received another mental health or psychiatric diagnosis and those who said they hadn't. While this is a little bit of an imperfect way of doing this, it does give us a bit of a sense. Do we see higher suicidal ideation and behavior among those who also have not only PMDD but also depression or also PTSD?

What we found was there was a slight increase in those folks but not very much at all. For example, 67% of those with only PMDD reported a history of suicidal thoughts compared with 74% who had also on top of PMDD a depressive diagnosis or PTSD. What this suggests is that it's certainly worst if you have other things going on as well, but just PMDD itself and just that hormone sensitivity itself is enough to cause suicidal ideation and attempts. I think that that's really groundbreaking.

Brigid Bergin: Listeners, we do want to hear from you, and we know that this can be a tough conversation, but this is a space to have that conversation. If you feel like you have PMDD or maybe suspect you do, we're curious how has it affected your life? Give us a call at 212-433-WNYC to share your experience or to ask our guest Dr. Eisenlohr-Moul your PMDD-related questions. Again, that's 212-433-9692.

Certainly, doctor, I think talking about this helps to destigmatize it because it also lets people know that this is something that a lot of people are dealing with. Your study found though that patients waited on average 12 years, is that right? And saw roughly six medical professionals before getting an accurate PMDD diagnosis? It's more than a decade. Why, in your opinion, is the medical community so bad at diagnosing and treating menstruation-related issues?

Dr. Eisenlohr-Moul: It's a really complex question. I have a few ideas. I think there's a lot of stigma associated with menstruation. I think that on the one hand we're dealing with the stigma of menstruation, people not wanting to bring this up, or people bringing it up and their healthcare providers sort of filing it under normal period-related experiences. I talked about that PMS myth. I think that healthcare providers are prone to believing that as well, "Oh, this is just normal, and we shouldn't make too much of it."

I think there's also this sense in which very well-intentioned feminist approach can backfire here, and say, "Well, this PMS thing, isn't that just a patriarchal concept that is made up to keep women and menstruating people down?" As I said before, I think there's some truth to that. I think that this idea that all menstruating people are emotional because of their hormones is just wrong. We just know that that is not the case, and at the same time, there are people who are really suffering and need diagnosis and treatment.

I think that many healthcare providers, including female doctors, may hear about these PMS symptoms and think, "Oh, this is just this person's partner telling them that they're being irritable and dismissing their feelings, and so I should encourage them that their feelings are real" and things like this.

I think there can be some sort of well-intentioned ways in which doctors minimize, but I think really understanding that this is not normal. If it's interfering with someone's life, we need to take that seriously. There was also a big fight to even get this included as a diagnosis in the DSM-5, which is the psychiatric manual. Much of that was wonderful, well-intentioned female physicians fighting against it, because they felt that it would be stigmatizing against women and people who menstruate. They felt that this was sort of making a disorder out of something that was normal.

Ultimately, the people who wanted to make it a disorder won because there was evidence that it's not normal. It's not normal to be extremely depressed and not be able to maintain your relationships in the weeks before menses, this is not normal. This is not something that we should just accept. This is something that needs diagnosis and treatment. It was finally made a diagnosis in 2013, but the training of physicians is really taking its time catching up, and so most doctors don't know about the disorder. Many of the patient advocates that I work with at IAPMD say that their doctors Google it in front of them, things like this. It's really quite difficult.

Brigid Bergin: Let's take some callers. Alicia in Queens, I think you have an experience related to PMDD that you want to share with us?

Alicia: Yes. Thank you for taking this call. I'm 71 years old, and from the time I started menstruating at 13, I began to have difficulties. I had severe pain and depression. I thought about suicide almost daily. It wasn't until I was 50 years old when I had my hysterectomy that we realized what was going on. I had endometriosis and systemic Candida that was causing all of this issue.

I'm just saying that we have to look at the cause of things, we can't just necessarily label all the things. I understand that you have to have a name for things, symptoms, syndromes, but we have to look at the deeper cause about what's happening here. Mine was systemic Candida all those years.

Brigid Bergin: Alicia, thank you so much for your call. I want to get a few more callers in. I'm so glad that our listeners are joining this conversation. Natalie in Clinton Hill, Brooklyn, welcome to WNYC. What's your experience with this?

Natalie: Thanks so much. Well, I got sober, like a year and a half. I'd been sober for about a year and a half, and so many of my mental health issues and emotional issues went away when I just took away the drugs and alcohol, but this pernicious feeling of "I'm having a great day, but I want to jump in front of this car" was happening.

My doctor at Bellevue said, and it was a man, said, "It might be this, it might be that." Then I thought it seems to be linked to my period. When I told him that, he said, "Well, we have someone called a reproductive psychiatrist here that I guess we don't have everywhere." I spoke to her. She had me charted. Now I'm on a birth control that takes away my period altogether. I don't get a period, and I also don't get any of those thoughts anymore.

Brigid Bergin: Natalie, thank you so much for calling. Dr. Eisenlohr-Moul, two really interesting stories there. Any reaction to either of them?

Dr. Eisenlohr-Moul: Yes, I think this is beginning to get into both biological causes and treatment. I'm so glad that in both cases there was a resolution. Thank you for sharing those stories. I'm fundamentally a clinical scientist, a translational scientist. I run clinical trials to try to understand the root biological causes of this brain hormone sensitivity, as she mentioned. I completely agree that we need to continue to conduct experiments as I and others are doing to really try to pinpoint what is the biological cause. Then that will allow us to develop treatments.

I'm so glad that birth control was a solution for the second caller. For many people, that doesn't work, for many people it does. There are some clinical trials showing a benefit of certain types of birth controls and certain ways of taking those birth controls so that you don't get a period, as she mentioned, but we need so many more options. I think in order to get to those options and to develop those new treatments, we really, as our first caller said, need those experiments, those studies to really drill down and understand the basic biology of what's going on here, why are these abnormal reactions happening in the brain?

We know that the hormone levels are normal in these disorders, which is really fascinating. It's not a hormone imbalance but rather there's something about the way the brain is failing to adapt to these dynamic changes in hormones across the menstrual cycle that seems to trigger these symptoms. There's so much work to do, and hopefully, we'll be able to add to the list. Not just hysterectomy and birth control pills, the other thing that we know works quite well for many people is correcting the serotonin imbalance that we know that we see in the luteal phase in PMDD, and SSRIs, interestingly work quite well for that, but outside of those options, we don't have enough. We need more.

Brigid Bergin: I want to bring another caller, Kenny in Wayne, New Jersey into our conversation. Kenny, welcome to WNYC. Can you describe your experience and your connection to PMDD?

Kenny: Yes. Hi, I want to thank you for talking about this topic. I think it's very important. I want to talk about my experience as a man who gets their period. I'm a trans man, and I also suffer from premenstrual dysphoric disorder, and then on top of that, I have pretty bad gender dysphoria as well. Going on testosterone helps me a lot with aligning my body to how I feel, but it still was not able to stop my period. I still suffer from severe dysphoria around that time and of course the severe physical and mental symptoms that come along with that.

Then also along with that, there is the culture surrounding periods that is very aligned with femininity and womanhood, and I'm not really allowed in that space, and I don't feel comfortable in that space. Even along with-- I can't really buy pads or tampons at the store because I don't really want to go in the aisle labeled feminine hygiene, things like that.

It really causes severe depression and anxiety just struggling with something that most men don't have to struggle with and just not really being able to openly talk about it the way that some women feel very comfortable talking about it with each other, at work when people talk about getting their period, I can't really contribute to the conversation. It feels like in a way I'm suffering in silence. There's also on top of it, like I said, the general issues that come along with it and then the dysphoria on top of that. It's a very interesting dichotomy of the cultural issues and then the personal issues as well.

Brigid Bergin: Kenny, thank you so much for your call. Dr. Eisenlohr-Moul, this is obviously a really complicated set of circumstances and there are so many cultural elements to it in addition to the biological and psychological components of it, any reaction to Kenny's experience?

Dr. Eisenlohr-Moul: Yes. First of all, thank you so much for sharing your experience. I think it's really powerful to get these stories out there. This is the reason that we try to use the words people with menstrual cycles or people who menstruate or people who ovulate, and I do my best to catch myself because really ultimately we're talking about the menstrual cycle, we're not talking about gender, we're not talking about whether or not somebody is a woman. I think that the more we can make this about just people with bodies who need help with various kinds of hormone-related brain disorders, these kinds of things, I think just making it very concrete like that.

I agree that we need to purge all of this gender-related language out of talking about menstrual cycles and pregnancy and other things like this, that really I agree cause a lot of-- I've heard this from other people as well, cause a lot of dysphoria in coming into these spaces and make it difficult to get the help that you need, because it's so painful to enter a clinic, for example, that says, "Women's Mental Health." Right? That is, as the other caller mentioned, where people who would be called reproductive psychiatrists would be employed. That's where they would practice and see patients.

I think it really brings up the importance of talking about reproductive psychiatry and talking about hormones and talking about the underlying biology and making those spaces more inviting for people with these other experiences.

I think the other thing that I would say is that, I can't give medical advice, obviously, but I will say, I think this is something that people who provide gender-affirming hormone care need to learn about as well that sometimes dosages or different approaches need to be taken so that the menstrual cycle can be flattened out in addition to providing the testosterone. Those are two separate issues, and in this case, it sounds like perhaps further consultation around that would be a good idea because they're both important.

Brigid Bergin: Thank you so much for that. Let's go to Ann in Brooklyn. Ann, thanks for calling WNYC, I think you have your own experience and a question.

Ann: Yes. Thank you very much. This is something that I've dealt with myself I would say starting probably in my mid 20s, and it's gotten increasingly worse. I'm now 45. One, you touched on this a little bit, but I'd love to hear a little bit more about some of the remedies that are being looked at. I am one of those people who cannot take hormonal birth control, and I'd be curious what is being studied.

Then, my other question that I have is anything about the genetic component. My mom struggled with this. I remembered seeing some of it or hearing it as a kid and then I also have a daughter who's a tween and probably going to get her period pretty soon. How do you talk to a kid about this? I do think she'll have a grace period of say 10 or 15 years before it gets really bad if it's a similar pattern to mine, but that's a really hard conversation to have with a kid.

Brigid Bergin: Ann, thank you for that question. Dr. Eisenlohr-Moul, any thoughts on that?

Dr. Eisenlohr-Moul: I think this is so important. One thing that often occurs to me is that we learn about what's normal in these stigmatized spaces, like around menstruation, we really learn about what's normal from our families because that's the only space where we maybe feel that it's safe to talk about things that are this stigmatized. I often hear patients come in and say, "As all women do, I have very severe PMS" and realize that they're kind of comparing notes with their people who are genetically related to them, as you mentioned, they're comparing notes with their sister, with their mother, with their other menstruating genetically related family members.

This informs their idea of what's normal, and so often people with these family histories of PMDD will come in, will take a lot longer to come in I find and ask for help because they tend to frame this because of their information coming from their genetically related family members. They tend to frame it up in their mind as this is just normal, this is what all people go through. It's a tough thing to study the genetics of because we need daily charting to really confirm that the symptoms are changing, as I said, because there is so much bias and people tend to not be able to report that very accurately because of this PMS myth that I was talking about.

On the other hand, I think that, just anecdotally, it seems very clear to me that when I meet people and talk about what I do, I tend to get one of two responses. One is, "Oh, yes, all females have that. My mom, my sister, and me," or someone says, "Oh, yes, that's made up. I don't have that. My mom doesn't have that. My sister doesn't have that." I think that really suggests that there probably is a genetic component and hopefully we'll learn more about that over time.

With respect to treatments, selective serotonin reuptake inhibitors or SSRIs, they were originally marketed as antidepressants, but that's kind of an unfortunate misnomer here, because many clinical trials have shown that they beat placebo for PMDD and they beat placebo very rapidly after only about 24 hours, which is faster than they work in depression and anxiety disorders.

This really suggests that they are correcting what we know is a serotonin imbalance in the luteal phase in people with PMDD. SSRIs really are the first line of defense, and a lot of people have a very good experience with those. After that, Yaz and some of the other drospirenone-containing hormonal birth controls taken on a 24/4 or a continuous kind of schedule, there's also some clinical trials evidence for those.

Beyond that, there are some gynecologic approaches, chemical menopause which is reversible. GnRH analogs like Lupron can be given monthly as an injection to basically induce a short-term menopause. We know from many clinical trials that that also works for PMDD, and we think that that might even in some cases be a long-term strategy as sort of a reversible menopause.

Then, as our first caller mentioned the option of removing the ovaries, which of course is an extreme option but does provide relief for a lot of people. The final thing that I'll say is, about talking to the daughter, and I'm not a child psychologist, so I would encourage you to seek the input of a child psychologist around that, particularly if you start to see those patterns emerge.

I think just being very genuine and open about some of your own struggles in the same way that if your family had a history of diabetes, you might mention, "Hey, our family needs to be careful about how much sugar we consume because we have this really high genetic risk for diabetes." You might kind of frame the conversation in a similar way that, "Hey, we might want to just pay attention to make sure that you're not also having some of these changes" and just encourage a curiosity around that.

Brigid Bergin: We're going to take one more caller, but I just want to acknowledge we've had so many callers for this segment just wanting to share their own experience, expressing gratitude that we're having this conversation. I'm so grateful that they called in. I'm so grateful to have you here, Dr. Eisenlohr-Moul, to really be able to shed some light on what this is all about and to I think probably for some of these listeners validate what they have experienced and have described and probably maybe not felt like other people understood. Let's go to Korrin in Nyack as our last caller for the segment. Korrin, I understand that you are yourself an OB/GYN, is that correct?

Korrin: Yes, I am.

Brigid Bergin: What is your-- [crosstalk]. Go ahead.

Korrin: My second daughter has always had PMS, but over the years, it has really developed into PMDD where she actually gets suicidal and is uncontrollably out of whack and out of balance. Just recently, and we didn't find any way to get a grip on this and it was really scary. A couple of months ago, I read in the literature that taking serotonin reuptake inhibitor might help, and we tried it out. We gave her Prozac, and her partner says that within two hours already he feels there is a change in her. He would have to flee the house when she was really bad, it was untenable, and the Prozac is really great, just taking it when she knows it is coming-

Dr. Eisenlohr-Moul: Yes.

Korrin: -and during the day that she has the severe symptoms really makes it livable. It makes a huge difference.

Brigid Bergin: Korrin, thank you so much for calling. I heard you acknowledging, doctor. Does your study support some of what her experience was?

Dr. Eisenlohr-Moul: Yes, I think that just the idea that these emotional switches in PMDD happened very fast both on and off. I think that's really fascinating, and it can tell us something about the biology. I want to say again that a lot of people with PMDD resist the idea of taking an SSRI because they believe they're being given an antidepressant because they're being misdiagnosed.

I just want to encourage those folks that that's an understandable concern, but in this case, SSRIs really are the best option that we have, and they don't work for everyone, but when they do work, many people can take them only in the luteal phase, only in those two weeks before menses, and they work just as well. If we were going to relabel SSRIs now, I would probably call them PMDD drugs first and foremost because they work the fastest and the best for PMDD of anything that they treat. I'm glad to hear that rapid effectiveness is really showing up for this patient as well, and I wish them the best.

Brigid Bergin: I want to ask two more questions before we let you go. There has been some evidence and certainly a lot of personal anecdotes that the COVID-19 vaccine and getting sick with COVID itself can affect people's menstrual cycles. Can you shed any scientific light on that?

Dr. Eisenlohr-Moul: Yes. The evidence seems to be a bit mixed, and I apologize I haven't read all of it, so I'm just going to say that, but the conclusions of some larger studies that I felt that the methods were defensible, seemed to suggest that there were some temporary changes, but for the most part, those changes were mild to moderate and temporary.

If you are someone who menstruates, who does experience a change in your bleeding that is upsetting or impairing for some reason, it's causing a lot of pain or it's very, very heavy bleeding, definitely go see a gynecologist, get it checked out. I would say that it's really important not to let those concerns-- Unless you've had that happen in the past, talk to your gynecologist, but don't let those concerns prevent you from getting vaccinated because it looks to me like the changes are, generally speaking, mild to moderate and temporary.

Brigid Bergin: That's good to know. Then, just finally, are there any PMDD-related resources you'd like to share with our listeners?

Dr. Eisenlohr-Moul: Absolutely. I've been the clinical advisory board chair volunteer at the International Association for Premenstrual Disorders or IAPMD for five or six years now. We've worked really hard to build up the website to be a comprehensive science-backed resource for patients and medical providers. I really encourage anyone who's interested in educating themselves about themselves or a loved one, or interested in getting support.

We also historically have had support groups for specific groups of people like teens or trans and non-binary folks who menstruate. Definitely check out the website. There's lots of information from diagnosis to treatment, to support. I really encourage you to start there. I think it's the best place to start.

Brigid Bergin: We're going to have to leave it there for now. Dr. Tory Eisenlohr-Moul, Assistant Professor of Psychiatry and Psychology at the University of Illinois at Chicago and Clinical Advisory Board Chair at the International Association for Premenstrual Disorders. Thank you so much for being with us.

Dr. Eisenlohr-Moul: Thank you.

Brigid Bergin: If you are experiencing distress or active thoughts of suicide, please call the National Suicide Prevention Lifeline at 1-800-273-8255. You can also visit the International Association for Premenstrual Disorders website at iapmd.org for free peer support from trained volunteers. This is the Brian Lehrer Show on WNYC, and I'm Brigid Bergin filling in for Brian today.

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