What is PMDD: An Interview with Brett Buchert, Director of Care & Support at IAPMD

In honour of PMMD awareness month we sat down with Brett Buchert, the Director of Care & Support at the International Association for Premenstrual Disorders (IAPMD), and talked all about what PMDD is, how it affects people’s lives and the stigma around it.

Brett, thank you so much for talking with me today about Premenstrual Dysphoric Disorder.

Yes, glad to share some information.

I appreciate your time and expertise in all of this. I know making connections with other people who live with PMDD has been huge for me, so I hope we can do the same thing for some folks who come across the article. So, for those who haven’t heard of PMDD, what is it?

PMDD stands for Premenstrual Dysphoric Disorder. It is a cyclical, hormone-based mood disorder. What that means is that women with PMDD will get mental health symptoms like depression, anxiety, mood swings, intense irritability, suicidal thoughts, and more in the premenstrual phase of their cycle. Symptoms can range from lasting a few days before their period starts to a whole two weeks before their period starts. And then usually the symptoms will go away within a few days of starting their period. I also want to start by saying that whenever I talk about PMDD, I always mean inclusive of all people who experience PMDD, including women and AFAB folks. 

How is it different from PMS (Premenstrual syndrome)?

PMS and PMDD are different both in their severity and the type of symptoms they’re primarily associated with. PMS is primarily associated with physical symptoms, though you can have some mood symptoms as well. And it’s usually not severe enough to interfere much with your quality of life and your daily life. PMDD is characterized by the emotional and mental symptoms, so if you just had physical symptoms it wouldn’t be PMDD. PMDD requires those emotional symptoms. Also, PMDD is severe enough to affect your daily life, including relationships, work, school, and also quality of life. So, I think of PMS as discomfort, and PMDD as debilitating.

I find that language really helpful. Thanks for that. I’m wondering how many people live with this? Do we have any idea?

The estimate is about five percent of women in their reproductive years. So that’s one in twenty women. In the US, that’s about four million women. In the UK, that’s one million. In Canada, it’s half a million. In the whole world that’s over sixty million women. So, it’s a lot of women suffering this way, and it may be surprising that it’s so many because we don’t talk about this really. The people who have it, we might feel like we’re the only ones. And that’s a lot due to stigma and feeling like we can’t talk about it, but there are a lot of women struggling with this.

Are there a lot of people who go without a diagnosis?

Yes. The research isn’t clear on what the statistics are, but in the past, they’ve said up to 90% are undiagnosed. And speaking for myself, I lived with this for ten years without a diagnosis. And that’s not uncommon – the average amount of time for a diagnosis is twelve years. So I’m even on the luckier side. It’s not surprising that so many are living with this and don’t know.

What kinds of issues do you find people come across when they do live with these symptoms? Accessing medical services, in their day to day lives?

First, just dealing with the kind of symptoms like depression and anxiety that PMDD brings can be really difficult, itself. But also, people with PMDD are fighting stigma and often lack of support even in their family, doctors, therapists who don’t understand what is going on for them. It can be very isolating, and people feel really alone sometimes. PMDD also causes a lot of issues with work and school and relationships, many of us don’t feel we’re able to work and focus when we’re in our PMDD time, so some people are unemployed because of that. Because there’s not work that can be flexible with their cycle in their industry. Relationships are really affected, so a lot of people will say they lost relationships because of PMDD. It can be really hard to parent during PMDD, it really just affects all aspects of life.

It sounds like there is no one part of people’s lives that it doesn’t affect, it’s really everything when symptoms come up.

Yes.

You mentioned that doctors and therapists might not know much about PMDD, is that a common concern?

Yeah, absolutely. We surveyed people and they said it took up to six doctors on average before they received a diagnosis. Even if our doctors are the most caring and helpful of doctors, they might just not know that this is a condition, that it exists, and can’t provide the treatment they need. Some of the reason for this is that PMDD was only included in the main text of the DSM (Diagnostic and Statistical Manual of Mental Disorders) in 2013. Not everyone is up to date on that. And also, internationally, as the DSM-5 is mainly used in the USA, PMDD is just now going to be included in the ICD-11, which isn’t even out until 2022. Doctors just aren’t being educated on this in their regular education, and the ones who do know about it have had to go above and beyond to learn. Also, PMDD seems to fall through the cracks in the medical system because it’s a condition that’s hard to categorize. It’s also hard to say if it’s psychology, gynecology, psychiatry – there’s a conversation whether this is a mental health condition or a gynecological condition. Because of that, it’s been hard for one area to take this on and dig into it, do research, and help the women who are struggling.

From what I’m hearing is we’re hitting on a few different challenges in the medical system as well as social stigma, stigma in the workplace… Kind of falling through the cracks on a lot of fronts.

Yes, definitely.

So tell me about your organization, IAPMD!

IAPMD is a lifeline of support and resources for women who have PMDD, and also other premenstrual disorders. We offer peer support, both one-on-one support and group support. And we have 20, 000 members in our groups – so we’ve been heavily focused on supporting the patient community. But we are also building relationships with clinicians and researchers. We’re supporting the patients, trying to educate doctors and clinicians, also working with researchers to further research into this condition and treatments that might become available. 

Where is it based? How can people access these services?

IAPMD is based in Boston, but we are pretty virtual. The staff are all over the world, and our volunteers as well. Really, anyone can access IAPMD as long as they have internet. Just go to our website, we’re also on social media.

If people want to learn more about it, where should they go?

They should go to www.iapmd.org.

So you coordinate the peer support team at IAPMD. Can you tell me more about peer support: what role does it play for the folks who access it?

Peer support fills an important role in the PMDD community in particular because not so many people know about it yet. You can’t just go to your friend and talk about PMDD because she might not even know, even if she wants to help you. So peer support is going to people who really understand how difficult this condition can be, how it’s debilitating. With a “peer” you can talk openly about PMDD, you don’t have to explain yourself, because we get it, and you are not alone. We also do crisis support, when people are struggling – as suicide is a big issue in this community. We also help people find the right resources and information that they’re looking for. We are always directing people to the resources on our website, and we have a really robust FAQ. We really help disseminate the information, so people are the most informed they can be, to make the best health decisions for themselves, and ultimately feel better.

It sounds like a really effective and important thing to do, and also really interesting in this era that we can connect people from all over with the common experience of living with PMDD. Is there anything you’d like to add?

April is the official PMDD Awareness Month. This year will be the sixth year of it. So we at IAPMD team up with Vicious Cycle: Making PMDD Visible and Me v PMDD, which are the two other main PMDD-focused organizations, to host this awareness month. And it’s both the time to raise awareness in our own communities and celebrate that we live with this, and we’re still fighting, we’re still breathing, and getting through it. That is worth celebrating and something to be proud of. Some of the initiatives we have this year, one really exciting one is we’re having buildings and landmarks lighting up all over the world teal throughout the month. We have 31. That includes Niagara Falls, the CN Tower in Toronto, the Bell Tower in Perth, Helmsley Building in New York, and even small local city halls. So that’s really exciting, and even though in the COVID-19 time some of us are restricted to our homes, we’re trying to do things like reach out to locals to see if they can capture the buildings lit up. We also host the PMDD Awareness Challenge on Instagram, which encourages people to share their story and multiple aspects of how PMDD affects their life through daily prompts. That can be great to reach our social media communities. Also doing a virtual 5k and fun run, which works for this time that things are remote. 

So this month is the month to pay attention, look at your city hall, look around, see what’s going on, and see if you can connect with folks who live with PMDD or someone who lives with PMDD. It sounds like it affects a lot of people in our lives.

The Theme is Ignite the Fight this year. Against the symptoms of PMDD but also Ignite the Fight for Awareness. That’s how we’ll make sure this condition is known, and studied, and that doctors know about it. So instead of what I went through and what so many of us go through, we don’t have to wait ten years for a diagnosis. Our symptoms start, we struggle, we go to our doctor, and they can diagnose us then and get us on a treatment plan. It can improve the lives of so many people. 

Is there anything else you’d like to add?

PMDD is connected to sexual health – a lot of people with PMDD can have difficulties being sexually well. So, I felt like that was a tie into what you’re doing and that it’s important to do what you need to do to fulfill that part of life.

Thank you so much for your time. I can’t wait to share this with our readers.