Why we love it:
Talking about women's health issues is so something we're passionate here at BeYou. And although we want women to have a positive experience with their periods, sometimes menstruation can be a little tricky, to say the least. In this episode of the Flow Down, Jess and Steph discuss PMDD, premenstrual dysphoric disorder and what it's like for the women who live with this condition in their daily lives.
We're sure you'll love this episode just as much as we do so make sure to give it a lesson below and subscribe to The Flow Down on your favourite podcast app.
Listen & Learn:
Hey there, Flow Down listeners. Before we play our episode, we wanted to let you know that we'll be talking today about PMDD, which is a mental health disorder. PMDD is really hard and felt important to mention ahead of time that we do talk briefly in this episode about its symptoms, which can include feeling suicidal. Thanks for being here with us.
Welcome to The Flow Down, a podcast all about periods. I'm Stef, a women's health coach.
I'm Jess, a journalist. This is episode 12, which we are dedicating to PMDD awareness.
We'll hear from two very special guests what it's like to live with PMDD, plus, talk about some resources.
Thanks for joining us.
Jess, it's April. When did that happen?
I know. We're already deep into springtime up here in North America.
Wasn't it around this time last year that you called me and we're like, "Want to start a podcast?"
Yes, it was. The Flow Down was officially conceived around this time last year.
Such a special, special month. There's also something else that we really appreciate about April. April is PMDD awareness month. PMDD stands for premenstrual dysphoric disorder.
Right. It's a month for people and organisations around the world to work to raise awareness for those affected by PMDD. Stats show that one in 20 menstruators may suffer from it. So, clearly, the awareness is much needed.
It definitely is. There still also a lot that's unknown about PMDD, not just from a medical perspective, but also as a society. Personally, I don't suffer from PMDD. Jess, I know you don't either. We're still learning a lot ourselves, but we did feel it was important to contribute in some way and be a resource for information here on The Flow Down.
Yes. Before we continue and hear from our guests, we wanted to play a short clip of a video made by Me v PMDD. Me v PMDD is an app to track symptoms and treatments of PMDD. This video features the voices of PMDD sufferers explaining much better than we can the way this actually feels.
PMDD is a lot of things.
It is absolute hell. It is like you're possessed.
You don't feel like the same person.
PMDD is life-changing.
PMDD is characterized by symptoms that begin at around ovulation and then end within a couple of days of starting your period.
It's daunting because I know that I'm just a couple of weeks away from having it happen again and again and again.
Symptoms include deep depression, crippling anxiety, memory loss, brain fog, binge eating, uncontrollable rage, thoughts of violence, suicidality, self-harm.
It saps out every single hope that you have left.
Mm. Yeah. Hearing their voices, it's clear that this is more than just PMD. I think for many of us that don't suffer, there is this sense that PMDD and PMS are pretty much along the same lines.
Yeah. There are similarities. They both typically affect your mood. Things like feeling sad or anxious or angry or tired, having intense cravings and a lack of interest in your day-to-day activities can all be symptoms that fall under the umbrella of either PMS or PMDD, and they're both cyclical, both show up in a week or two before your period, but there are things that set the two apart. There are a few, a few things, a few distinguishing factors. The ones that stick out the most to me are that PMDD has a different root cause, which makes it harder to treat or alleviate the symptoms.
Also, someone with PMDD will suffer from a cluster of those symptoms or many of those symptoms. In fact, for someone to be diagnosed with PMDD, they need to have at least five of the symptoms that are on a predetermined list. I mean, just imagine, right? It's not just one symptom that you're dealing with, not just feeling irritable, but feeling irritable, and depressed, and angry, and unfocused, and tired. It just really is a lot.
Then sadly, there's one other thing. Studies actually show that 30% of people with PMDD will attempt suicide in their lifetime, and being suicidal is something that seems to be particularly unique to PMDD.
Yeah. PMDD is actually listed as a depressive disorder in the DMS, the Diagnostic and Statistical Manual of mental disorders. What's really wild is that until quite recently, there wasn't even much support for people with PMDD.
Yeah. I mean, we want to see more awareness, more support, more compassion out there across the board when it comes to PMDD.
Yeah, and as more and more people begin to learn about PMDD, we're seeing communities of support both in person and on the internet such as on Instagram. You can find tons of information on Instagram under the hashtags PMDD Awareness, PMDD or Shine A Light on PMDD.
The organisation that's really leading the effort is IAPMD, the International Association for Premenstrual Disorders. Today, we get to hear from the organization's director, Amanda LaFleur, who I connected with over a year ago on social media.
Amanda is amazing. Then later on in the episode, we'll hear from author Chloe Caldwell, who uses her writing as a way to process her experience with PMDD. I just love both of these perspectives and both of these women.
Me, too. I'm really grateful.
So, Stef, can you tell us just a little bit more about Amanda and about IAPMD before we play the interview with her?
I would love to. Amanda is amazing. She battled PMDD herself and ultimately turned her experience into a career as a patient advocate for women with reproductive mood disorders. Amanda is the co-founder and executive director of IAPMD. IAPMD is a global organisation. It's actually the only global nonprofit that provides peer support, education, and a wealth of resources for women and menstruators. It's really an incredible all-encompassing resource. I'm so thrilled to have Amanda with us today. She is another incredible example of what it means to be a period warrior.
Absolutely. So, let's go ahead and play our interview with Amanda.
Welcome, Amanda. Thank you for joining us.
Oh, thank you for having me. It's a pleasure to be here.
We're really so grateful to have you here on The Flow Down and out in the world doing the work that you're doing. Before we dig in, could you take a moment to tell us in your words how you define PMDD?
So, PMDD stands for premenstrual dysphoric disorder. The clinical way we describe it is a cyclical mood disorder, and it's a severe negative response to the hormones estrogen and progesterone. So, those include depression, hopelessness, anxiety, in its very severe cases, suicidal ideation and behaviours. Someone who has PMDD or a history with PMDD, I mean, I can just describe it as a terrible life sentence. It just impacts so many areas of a sufferer's life, and some might say or I would say it's like a Jekyll and Hyde two weeks great and two weeks terrible.
Just to put this in context, how many people are affected by PMDD?
The estimation is one in 20 are living with PMDD. Sadly, about 90% of those go undiagnosed. Some recent research that we did in this last year that's going to be published later this year indicates that, on average, it takes those with PMDD about 12 years to get an accurate diagnosis, which is a really long time to be misdiagnosed, living with these symptoms, not knowing what's going on, and we want to change that.
Wow. Thank you for sharing that. So, as you said, PMDD is an extremely negative response to estrogen and progesterone. These are hormones which change throughout the menstrual cycle. Still, PMDD is not a hormonal disorder per se unlike other cycle disorders, which might be caused by hormonal imbalance. Can you talk to us about what causes some people to be extra sensitive to these hormonal fluctuations that happen throughout the cycle?
Oh, that's a great question. So, PMDD in itself is not a hormone disorder. Those with PMDD, most of them do have normal hormone levels. There are coexisting conditions like hormone imbalances or hormone deficiencies that can coexist, but PMDD itself is an abnormal response to normal fluctuations of estrogen and progesterone.
Sadly, we don't know exactly why some women and AFAB individuals have this negative reaction, but research is coming out and it says that those with PMDD have a different neurological response or genetic makeup. That's the closest we've gotten so far to understand why some have this disorder and some don't, but, unfortunately, there's not good evidence pointing to what causes PMDD specifically.
Wow. So, Amanda, our listeners might think, "Okay. This sounds like severe PMS." They might not really understand what PMDD looks and feels like. So, we wanted to see if you could tell us about what this was like in your life. When did you start experiencing symptoms of PMDD, and what were those symptoms like for you?
Yeah. I'm happy to share. So, retrospectively, I remember my mom always saying I had really bad periods. I was always highly emotional. I recall being put on birth control at a very young age, probably around 15 or 16 not because I was sexually active, but because it was supposed to help control those hormone fluctuations.
If I also look back and see throughout my adolescence and into young adulthood, I was diagnosed with depression, with generalized anxiety disorder, all these different medications, and diagnoses. I mean, I just had these huge fluctuations of emotions that I don't think my peers were really having, at least not many of them and at least not in the open.
I was always in trouble. I was engaged in a lot of self-destructive behaviour. Sadly, as I got into high school, went to things like alcohol, binge drinking, and using drugs, and all the poor coping skills that anyone can adopt when they don't know what's going on.
Were you able to link those fluctuations to it being related to your period or no?
I always wished I had a time machine and could go back and retract all of those instances, especially the times I was feeling suicidal or that I was thinking about it or attempting it. So, all I have is my time machine is my mother's memory, and she does share with me that it did seem to go right before my period that I would have these, I don't know, I don't want to call it outbursts because it's not a very good word, but just having these episodes.
She said, "As soon as you got your period, you were just better. You were just better within a few days, and everything would calm down until two to three weeks later."
So, now, being on the other side of things, I can look back and say likely, yes, that was PMDD the entire time, just getting progressively worse over time. I think like a lot of women and young women, especially, we get labelled as overemotional or attention-seeking when there's likely something bigger going on that needs special attention, that needs an accurate diagnosis.
Yeah. From the outside looking in, though, it makes total sense that this was your path. Unfortunately, there's just so much noise to sort through as women and as menstruators when it comes to what is part of the course when you have a cycle and what's your body, your mind needing more attention. At some point, though, you were able to start connecting the dots. Did you bring it up to a doctor? Can you tell us more about what came next?
Yeah. So, sadly, I didn't bring this up to my doctor. I hadn't even heard of PMDD before, but I did when I was about to get married. So, this was in 2009. I was at my gynaecologist, and I said to her, I said, "I feel really low right before my period." It was maybe the first time in my life that things were quiet enough for me to pay attention to see the pattern, where it wasn't just chaos all the time.
She said, "Have you ever heard of PMDD?"
I'm like, "No."
It wasn't like a big thing at the moment. She almost treated it like it was no big deal. She's like, "Oh, yes. This happens. So, we're going to put you on Yaz, which is a type of birth control. This should help you."
I wasn't given any other tools, support or resources to help me in that journey. It was, again, more treated as this one-off thing that can be solved with birth control pills. So, it got really bad after I had my first child after my daughter was born. I was fine for about three months. Then all of a sudden, at the three-month mark, I just had horrible depression, just a lot of intrusive thoughts, just really scary thinking.
I ended up calling my gynaecologist. She's like, "It sounds like you have postpartum depression." In hindsight, I don't know if that's what it really was because I ended up getting my period again a month later. So, it was right around the time I would have started ovulating again, within that window.
So, I feel like that was the beginning when my cycle returned after the birth of my first child that things got really bad. I went to therapy, to talk therapy. I tried to not do SSRIs or antidepressants for a while because I was breastfeeding still. Finally, I said I'll go and gave in, and not that it was a bad thing to do, but, finally, I stopped breastfeeding, and went on antidepressants. It did seem to help a little bit, but it just kept getting worse.
I feel like during that time, that first year after my daughter was born, I had started again going through misdiagnosis, even though in the back of my mind I knew of this thing called PMDD that I was told that I likely could have it, but my doctor is like, "No. You have postpartum depression."
Then I was diagnosed bipolar. Then I was diagnosed may be before or after that generalise anxiety disorder. It was just this long string of, "Well, we don't really know what's wrong with you, but here are all these options that could apply."
Then finally, I was like, "None of these diagnoses seem to fit." So, I went online, I, finally, for the first, Googled PMDD. I came across a blog of a young woman in the UK about living with PMDD, and it was that moment of clarity, just this light bulb moment that I was like, "Yes, this is everything I feel. This is everything. This two weeks on, this two weeks off, two weeks on and two weeks off."
I will say finding that blog, and then the woman who wrote the blog, she had started a support group for PMDD on Facebook, and connecting finally with other people who understood what I was going through and I was able to say back to them, "I understand what you're going through. I'm going through it, too," just really changed everything.
It finally put me in the right direction.
When was that?
That was in 2012, 2012-2013.
I can't imagine all of that with a one-year-old.
It was just so hard and so sad because I missed out, just speaking for myself as a new mom, I missed out on quite a bit of that first two years, maybe two. It was pretty tough. Yeah.
So, I hear that you really faced this lack of information. I mean, thankfully, you finally found this blog and other people who could relate, but overall, there really wasn't much out there, it sounds like, as far as information or support. Did that made you want to create an organisation on your own or some kind of group dedicated to PMDD?
One thing I'm grateful for, personally myself, is I have a very entrepreneurial spirit. I have a long history of starting businesses. Some fizzled, some went on for a while, just my jam, but going through this journey and meeting with all these other sufferers, there were so many conversations of, "We need an organisation to represent us. We need somebody, something of the type." We talked a lot about there's organisations for breast cancer, there's organisations, I mean, really everything out there, and there is nothing for PMDD.
So, at first, I just started, I built a website, but then realising, "Okay. If we're going to be a real nonprofit, we got to get a board of directors, and we need to do all the things that are necessary with starting a nonprofit." So, I put out a call in the group. There was a select of amazing fellow women and sufferers that wanted to get involved. That was our first board of directors. At the time, it was NAPMD, the National Association for Premenstrual Disorders, and that's where it got started.
Well, IAPMD is such an incredible resource. The site alone is so comprehensive, and I can only imagine what an impact it's having on menstruators who are in this scenario that you're in at one point in your life. So, can you talk to us about how IAPMD is filling in the gaps and what your mission is?
Oh, thank you so much, first, for your kind words because that's absolutely the reason why we've gone through this transformation to become an international organisation is to really make sure that things are much better and much easier for others that have yet been diagnosed, that currently just found they're diagnosed or maybe they've gone through all forms of available treatment and nothing is working, so they're left in this gap of, "What do I do now because everything else just failed me?"
So, I have to give so much credit to our website. We have the most amazing team that I get to work with from our clinical advisory board to our board of directors, to our peer support providers. Everything on our website has been carefully written in a way to ensure that we are being helpful, that we are not causing harm, and we are sharing evidence-based information.
So, two years ago, we got about 90,000 unique visitors in 2017. This last year, we got 142,000 unique visitors to our website. So, 142,000 people around the world came to our website to find information that didn't otherwise exist-
... which is very promising and exciting to be a part of.
Yeah. Well, thank you. Yeah. I mean, it's just, I don't know. It's just the coolest thing ever, for a lack of better words. Just to remember where I was personally and the stories of those that I met in those groups that I still get to work with, seeing all of our journeys, it's pretty cool to know that there is now a resource and an area for support where there used to be none.
Yeah, and beyond even providing such thoughtful information, you also really create this community. You offer peer support groups. Can you talk to us about the importance of having peer support when you're living with PMDD?
There's such great bodies of research that show how important peer support is, especially when dealing with specific diseased communities. It closes the gaps between seeing a doctor or a therapist. It closes the gap between seeing a doctor, therapist in crisis intervention if you are in need of those services. There's just something so special about being able to connect with someone who intimately knows what you're going through because they have that same lived experience.
There's great services out there like the National Suicide Hotline and Lifeline. Those are great. Crisis Text Line, they're a great one, too. You can reach out in a time of need, but because the majority of those people that are on, the peer support providers, too, those other avenues don't have PMDD themselves, they have a limited understanding and their limited ability to help.
So, they may not be sure of where to send you for resources, what doctor to find, what treatments might work. So, we started this peer support programme just for those with PMDD, so that they could have those things so that sufferers could have someone with intimate knowledge, you can point them in the right direction, help them find a provider, and just listen and be with them in that moment when things are pretty rough and they don't feel understood.
There's days that, and I know one of my co-founders would agree to this, there's day you're just crying, you're like, "What is this for? Are we helping anyone?" and then you get that email that says, "Your website saved my life," or "This group changed everything," or "This doctor changed everything that you guys referred us to," and then you know it's all worth it, and we are making a difference. Just knowing that is pretty awesome that there was a positive impact.
I also want to point out that you are so inclusive with your mission. We know that PMDD does not just affect women, it also affects transmen, non-binary individuals, and I know that IAPMD makes it a point to stress that. Can you talk a little bit about the organisation's focus on inclusivity and why that is important to you?
Anytime I think we're talking about reproductive health, even the terminology that's used, it's always referred to women's mental health, women's reproductive health, but because there are several people within this community that are affected that don't identify as a woman, it is important to make sure that they're not marginalised, that they're not further lost in the gaps, in diagnosis, in treatment, in care, in support.
So, we've take it upon ourselves and we're still a work in progress. We're working on updating all of our resources to be reflective of an inclusive community. So, where we use the term woman, you'll often see we do women/AFAB, and AFAB stands for Assigned Female at Birth. So, if you're listening and you've never heard that term before and you see it on our website, that's what that stands for.
It just is a way to let those that are also suffering with this condition that maybe, as you said, are non-binary, transmale, identify as male or any other part of this gender spectrum, that they feel seen, that they feel heard, that they feel welcome to come to us for support, resources. I think the more that we talk about this type of gender diversity, the more others in the community that maybe didn't think about it, they're going to be like, "Oh. Oh, yeah. I might identify as female, but my peer over here in the same support group might not identify the same way." Having that understanding, it's just mutually beneficial for everyone involved.
So, you have really been growing leaps and bounds. Most recently, you've taken your organisation and gone international. I know that you're hearing from menstruators around the world. Can you tell us how IAPMD is a resource for people who might be suffering with PMDD in other countries and around the world?
Yeah. Actually, in your last question, you asked about the challenges and going international really exposes a lot of challenges. These are communities that are limited by geographic location, by access to technology because of so much what we do is online. They're restricted by language. So much of what is published online is in English. So, there's so many additional barriers that we are coming across and working to overcome.
We're trying to do that by, first, identifying populations around the globe that, one, may not have access to our website, simple enough. A lot of our support, peer support groups are on Facebook, and Facebook is blocked in several countries. So, one of those areas we're trying to overcome is how do we create access to support and information to circumvent these barriers.
So, we started a language translation programme. We have amazing volunteers who are translating sections of our website, translating our brochures and resources, so we can hopefully start getting those out in various languages. We're also looking like I was mentioning about limited access to the website, so we're starting a non-Facebook peer support group online, which will provide anonymity to those who want it, and then also circumvent any blockage to Facebook.
Yeah. I mean, going global, it's weird because we are always global, being the only resource out there, but I feel like changing to the International Association for Premenstrual Disorder has really made it official.
Yeah. Are there other places, other countries around the world that are emerging as leaders in PMDD awareness and support? Is the US considered a leader?
Yeah. So, that's a really good question. It's so funny because sometimes people say, "Oh, the US is so far ahead of where we are in terms of understanding PMDD and treating it," and I think in some ways that's true, but I also think we look to our partners in the UK and sufferers in the UK, especially there's an organization in the UK called Vicious Cycle, who we've done a lot of work with and their founder is actually on our board of directors. They're in the UK, and they are doing amazing things as far as advocacy, and really speeding along the awareness and education and inclusion of PMDD when it comes to women's health and talking about reproductive health and mental health.
So, I think because, again, so much is published in English, we really see the bigger advancements in English-speaking countries or countries where English is the primary language. I think PMDD is this unique disorder where it's a combination of mental health, as well as reproductive health or menstrual health, even more specifically, and you got two big stigmas of varying degrees in many cultures. So, just trying to overcome both of those stigmas is a big challenge within itself.
So, I feel like in the United States we've made huge progress in both talking about women's health and women-centric issues, as well as the mental health arena, but, of course, there's still a lot of work to be done.
Absolutely. So, you used this word recovery, Amanda. I know you can't speak for all sufferers, but what does the journey tend to look like or what can it look like from diagnosis to a sense of being recovered? What was that like for you?
So, when we talk about recovery with PMDD, that can look like many things for many individuals. For about 60% of those with the disorder, frontline treatment options, which include lifestyle changes, diet, exercise, better living, reduced stress, better sleep, all those things that do the body good, as well as hormone therapies like oral birth control. For some, progesterone therapy works well. For other, estrogen therapy works well, and then there are SSRIs, which they're a type of antidepressant.
So, for about 60%, those frontline treatment options work really well. They go on and live happy, healthy lives. We don't hear from them very often, to be honest. Those that we do hear from and tend to work with the most, just the 40% that are what we call treatment-resistant. So, they have tried frontline treatment, the first line of treatment options, the ones I just mentioned, and they have found no relief, and they fell into this gap. 40% is a huge chunk that fell into this gap, and myself included had the same experience.
They experienced increased risk suicidality. They have a very high risk of relationship problems. I think in our study we did, there was something like 98% reported losing a partner or severe impact on their relationship due to PMDD. So, recovery, what that can look like is, again, you're in that 60% that does well with the medications that are currently available.
Then the 40% that are leftover, they have one of two decisions. They can wait it out through menopause, where things can get dicey, especially through the perimenopausal phase. That's not to say some don't, some do, and they wait it out through menopause when they cycle stops and then symptoms stop along with that once they're postmenopausal.
Then there's those like myself who go the route of early menopause or surgical menopause, where they choose to have their ovary shut down by chemical means, usually through a Lupron injection, which is a short-term solution, and then they usually go on to have a full oophorectomy, which is removal of both ovaries, and then a hysterectomy, which is also the removal of the uterus, and usually with the cervix as well.
When I talk about recovery for myself, I ended up going down that path. I did have my ovaries removed in 2015 along with my cervix and uterus. So, I am in surgical menopause now. It's not an overnight fix. For some, it is. For some, we provide support through surgery, and we never hear from them again because they're off living their lives, but we do see a majority of those. It does take some time.
The time I'm talking about is the recovery time is it's physical, so you're healing from the surgery itself, but it's also the emotional and mental side of it. When you've lived with PMDD for so long, you've built up some really poor coping mechanisms, and it's to no one's fault, it's just we do what we do to survive. Those coping mechanisms might be negative self-talk, self-destructive behaviors, possibly addiction.
So, yeah, recovery ... So, when I say I am in recovery, it means I'm no longer having suicidal ideation, I am no longer having panic attacks except when I fly because I hate to fly. So, it's unrelated, but I'm also not partaking in self-destructive behaviors. That negative self-talk is being rewired. I'm not doing that anymore. So, that's what recovery looks like to me. It may look different for different people, but I think anytime you can stop and say, "I'm in a happy, healthy place. I like who I am. I feel good about my life. I'm not harming myself or others," I think that's what recovery should look like.
How important is it for patients to have a care team, people who are working with them whether a mix of different doctors, therapy, to piece together that particular treatment plan for them?
Yeah. A care team is so important and that begins with yourself, those in your home, your gynaecologist, and a mental health provider, and possibly a naturopath as well, if that's your chosen area. I think having a well-rounded care team is so important. It could also include maybe a crisis intervention specialist or a suicide prevention specialist on that team depending on how severe your symptoms are, but you start with yourself. Practice really good self-care.
If you've got a parent or a partner in the home or a friend or a family member, they need to be a part of that care team, too. Your partners and parents, we call them the frontline caregivers. They can go to our website even. Go to our website. Learn about what PMDD is, how to prepare for the bad times, what to do in a crisis situation. Be a part of that journey with the person who's suffering, and that is one of the best ways to support them.
Your story, it's like the hero's journey, really. Now, to see you sharing your experience for the better of others is just incredible. So, I'd love to ask you, can you leave us off with some words of support for those who are suffering right now? Tips for what to do and where to turn if you feel like you need help or ways to find that doctor or that medical support team or just any positive message.
I think the biggest thing is have hope, and know this is not your forever, but there are others that understand what you're going through that have been down this road and have come out the other side and, again, living happy, healthy lives. PMDD is not because of anything you did wrong. It's not because you didn't eat right enough, you didn't think your way out of it enough. It's not about mental fortitude or you ate too much gluten. It is not any of those things.
PMDD is not anything that someone deserves. To know that you're not alone, there are others out there that know what you're going through and are here to support you. I encourage anyone to come to our website at iapmd.org to get free and confidential peer support, get connected with peer support groups, download free resources, tools, anything you can use in your journey. We're here for you.
Thank you, Amanda.
Thank you. Thank you so much.
Oh, thank you both so much.
Thanks again to Amanda LaFleur for all the incredible insight. Now, we want to share with you the voice of an author we love, Chloe Caldwell. The Los Angeles Review of Books calls her one of the most endearing and exciting writers of her generation. We love Chloe's work because it gets at the depth and complexity and beauty and tragedy of being a woman in the world. Chloe also has PMDD, which she writes about with that same raw emotion. We asked her if she would share a little taste with The Flow Down.
My name is Chloe Caldwell. I'm an author and a creative nonfiction writing teacher. I'm the author of the novella Women and two essay collections. One is called Legs Get Led Astray and one is called I'll Tell You in Person. I live in Hudson, New York.
Writing at PMDD has been cathartic in many ways I think because PMDD is so full of intense emotions and when you write personal creative nonfiction, it gives the PMDD a place to go. When you're writing about something and you're putting it on paper, you can't hide from it the way you can if you're not facing something.
So, writing creative nonfiction really forces you to see things you don't like about yourself and see patterns that you may have. So, it's been a great tool for me, and I, obviously, I didn't plan it that way. I didn't plan on being a writer, and I didn't plan on having PMDD. It just happened that way. So, I am in ways really grateful for both of those things because they go together. I'm working on a book now about PMDD called The Red Zone. That's part memoir and part medical and research.
This is an excerpt from my essay titled The Red Zone: A Love Story. The first outburst was about my landlady. The outbursts are always about a woman. My landlady had sent me a text message with a couple of aggressive exclamation points and capitalisations referring to a misunderstanding over a national grid bill, and I ended up in rage and screaming for roughly 45 minutes.
My partner was at the ocean on Fire Island, completely bliss out. He'd been swimming and laughing in the waves of the ocean, he later told me. Then I called. Our conversation went, "I just want you to agree with me that she's a bitch," I said.
"I am agreeing with you," he replied.
"No. You're appeasing me."
This went on and escalated for 15 minutes until, "Jesus Christ, Chloe! What does your heart need?"
"I need you to agree with me."
"I am agreeing with you."
"No, you aren't, not wholeheartedly."
It didn't stop there. After we get off the phone, I had to bring it back up over text and I had to bring it back up the day after that, too. I brought it up again and again until I got my period and began bleeding, and that's when I could see the humour.
Outburst number two came on just as quickly. Tony got back into town after his second week in Fire Island where he was working. He brought me back a beautiful black dress and a pair of earrings. I had spent the day alone and manic love with him while he was at a wedding playing the piano. I felt utterly grateful for this generous human in my life.
When he arrived back at my apartment, he said he had to check on his Airbnbers, three women who are staying at his place while he stayed at mine. They were at a local bar, a bar we go to frequently, and he wanted to swing by with me to say hello. Instant rage. I interpreted this as the rudest possible thing anyone could ever do to me.
I feel rejected, humiliated, and rejected. I stormed out, slamming my door. I pity the new tenant who lives below me and began walking down the street toward the river. Tony caught up with me and we walked together shouting. When we got to the river, we sat at a picnic table drinking wine I had brought.
"This makes for great writing," he told me. "You can slam the door, run down to the river, throw your phone in, then smash your car into a deer."
I was left crying by now. "It's not as interesting on paper if you say." Then we sat down at my kitchen table and calmly worked the problem out.
Normally, I am the one who sees through people. Normally, I am the more spiritual in my relationships, the one more interested in growth and communication, but I have met someone whose emotional intelligence surpasses mine, and it is fucking infuriating. That night, we had sex on the couch and I began my period.
It was my therapist, Sharon, who suggested I had PMDD, premenstrual dysphoric disorder, a severe and disabling form of premenstrual syndrome affecting up to 8% of women who menstruate. The disorder consists of a cluster of effective behavioural and somatic symptoms that recur monthly during the luteal phase of the menstrual cycle.
PMDD was added to the list of depressive disorders in the Diagnostic and Statistical Manual of mental disorders in 2013. PMDD hits women often in their childbearing age. I am 31. For some women, it gets so bad, they have hysterectomies.
8% of women. That means you surely know someone with PMDD. Sharon suggested this about eight months ago around the same time I met my partner. My therapist is a woman and she is my partner's therapist, too, by sheer coincidence.
On the night of our first date, therapy came up as it does and we discovered we both been seeing Sharon regularly since 2013. That first night, we'd gone to hear music together and then went to his apartment next door. Tony sat on the couch and I sat on the floor by the bookshelf, drinking a can of Adirondack Seltzer. Tony says that after I found we went to the same therapist, I got up off the floor and sat on the couch. He told our therapist this as well, and she told him it was very observant.
Sharon writes notes down during our sessions, and I have discussed my period with her many times. Over time in her notes, she saw a pattern and suggested it might be PMDD, basically, PMS' evil cousin who comes to get blackout drunk and act mean toward everyone at the party.
Here's what PMDD is not. It is not crankiness and irritability. It is not a bad mood during which you crave dark chocolate. Chocolate won't do shit. I have specifically felt the PMDD kick in like a drug. I don't always get PMS. No chocolate craving or irritable mood. Often, I can be feeling quite wonderful until a PMDD outburst.
I remember exactly where I was standing each time it has kicked in and what I was wearing, by my window in the living room in my pyjamas, toothbrush in my mouth, on a random bridge in Connecticut Beach Town in my bathing suit, at a bar next to the man I love. My hands shake with rage. Anytime I have ever read about anyone's hands shaking, I didn't understand. I thought they were exaggerating.
Tony has told me he's seen my eyelids convulse for 10 seconds and my eyes roll into the back of my head. I panic, experience paranoia, I scream, and then I cry. Afterwards, in hindsight, my reaction seemed volatile and unbelievable to me. At the time, the feeling in my body is the most real thing I've ever felt.
In an article on Broadly called Living with PMS That Makes You Want to Die, I read, "I used to describe PMDD as being like Alice in the Looking Glass."
Caroline Hannigan, a 36-year-old from Manchester England said, "I'm in the same situation, but I'm two different people. Yesterday, things were all right, and today, everything has fallen apart."
My PMDD, Sharon explained, has possibly always existed. She's noticed patterns throughout the past years she's been seeing me. Now that I have a partner, I have a mirror and can recognise the patterns more easily. She reminded me of huge blowouts I had with my mother last summer, how I showed up at her house, screamed, and cried, and laughed. She reminded me of other fights I had gotten into with women friends, vicious text fights, slamming the doors after screaming at each other or the times I had reached out to exes in angry email or phone call during a certain time of the month.
Throughout my 20s, I was one of those women who never so much as tracked her period. I was a woman who would leave for a trip to Jamaica without considering where I was in my cycle, only to bleed the moment I boarded the plane. I was a woman who stained all of her underwear and sheets with blood. I was a woman who didn't know why she briefly felt crazy.
Friends of mine have similar experiences. One says she used to become a she-wolf the week before her period. Aside from complaining about my cramps, though, I didn't yet consider my period a major factor in my existence. I meet my period with annoyance at how it disrupted my life because of the bleeding and having to pop 10 Advil a day, but other than that, I ignored it.
Whenever I tried to track my period, I failed and give up after a month. The apps I tried to use to track it were cheesy and lame, and maybe I was in denial. I preferred living on the wild side, staining my underwear oblivious to when I'd get my period. It was a more unpredictable and risky way to live, and I never could commit to an app.
The first time I got my period at 11 or 12, I bled on the couch in my living room and pretended it never happened. My therapist was right. There were signs of my PMDD long before I met Tony. In 2015, I was at a doctor's appointment and had my period. I was sick with cramps, headache, diarrhoea. I walked into her room and she said, "Are you okay? I saw you walking and you didn't look too good."
"I have my period," I said.
"And? It shouldn't make you this sick or this wiped out."
"I get sick, debilitating cramps, headaches, leg and feet aches, mood swings, acne."
"Well, let's do something about that," she said. "That's a flush of serotonin leaving your body."
She then explained to me I could go on a low-dose of an antidepressant 14 days a month, from the day I ovulate until the day I begin bleeding. I declined the offer and continued to suffer, to complain instead of treating the problem. I never wanted to admit it was serious. I was in denial about it. Each month after my period went away, I'd forget about it until the next month, never wanting to illuminate it, never wanting to face it.
Thank you again to Chloe Caldwell. Thank you to everyone out there who shares their truth with honesty in whatever form that takes. We really appreciate you.
That wraps up our show today. We hope you came away from this episode with a deeper understanding and greater awareness of PMDD.
If you know someone suffering from PMDD or you just want to help spread awareness with friends, family, your partner, take a moment now to share this episode with them.
The Flow Down is edited by Jessica Weiss.
Our theme song is Crimson Wave performed by Tacocat courtesy of Hardly Art Records.
We'll see you next time when we talk about the phases of the menstrual cycle.
See you then.
Many of us struggle with uncomfortable physical and emotional symptoms in the days and weeks before our periods. But for an estimated 1 in 20 menstruators, the premenstrual phase can be debilitating. Premenstrual dysphoric disorder, or PMDD, is a mental disorder that severely affects sufferers’ ability to function. In honour of PMDD Awareness Month, we talk to Amanda LeFleur, the co-founder and executive director of the International Association for Premenstrual Disorders (IAPMD), who shares insights from her journey with PMDD and how IAPMD is a resource for those affected. And author Chloe Caldwell reads an excerpt from her essay “The Red Zone, A Love Story.”
Resources + links
IAPMD is the global resource offering education and peer support for anyone impacted by the core premenstrual disorders: Premenstrual Dysphoric Disorder and Premenstrual Exacerbation of underlying disorders.
UK based PMDD resource: Vicious Cycle, led by Laura Murphy.