PMDD: What you Absolutely Need to Know

Photo Credit: Unsplash.com

Photo Credit: Unsplash.com

The past two months, I have been learning in depth about an important condition that occurs in females: PMDD which stands for Pre Menstrual Dysphoric Disorder.  PMDD is commonly mistaken for PMS (Pre Menstrual Syndrome) and therefore overlooked as the severe condition that it can be which means females are going without effective management of their symptoms.

My goal in interviewing the Co-Founder and CEO, Brett Buchert, of her brand spanking new app called Me v PMDD (which, by the way, is the *only* app to track symptoms of PMDD not to mention it's very, very cool looking) is to bring awareness to you about how PMDD is definitely not PMS and, therefore, fundamentally essential for all females to understand in observing their own emotional variances and that of their loved ones so that anyone who appears to be presenting with diagnosable symptoms can get the help they need to support a healthy and happy life. 

PMDD Awareness is key because what seems to be "normal PMS" inside of one person's brain could actually be abnormal to what is mentally healthy including but not limited to the PMDD symptom of suicidal ideation. An example of this would be having one or more days in the Luteal Phase (post ovulation) when you thinking (either nonchalantly or with anxiety), "Hey, the thought of me driving my car into that tree over there to end my existence wouldn't be so bad today" as a reoccurring thought that evaporates with the onset of menstruation or within a couple of days of starting to bleed before returning again post ovulation. There are obviously more symptoms to PMDD than suicidal ideation and more factors necessary to consider in screening and diagnosis, so let's get to discussing all the factors involved, shall we? 

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Justina: So what exactly is PMDD and how is it different than PMS? How many women in the United States are estimated to be dealing with PMDD?

Brett: Virtually, PMDD is like having two weeks of your normal, happy life followed by two weeks from hell, month after month after month. 

PMDD (Premenstrual Dysphoric Disorder) is the ‘evil sister’ of PMS. While many of us women are no stranger to the symptoms of PMS, like bloating and mild mood swings, PMDD is when the symptoms we experience in the premenstrual time (luteal phase) become so severe that they interfere with our relationships, work/school, and overall quality of life. The most common symptoms of PMDD are sadness or depression, anxiety, extreme mood swings, irritability or rage, and even suicidal thoughts. The thing about PMDD is that these symptoms only appear in the premenstrual time, subside within a few days of starting one’s period, and aren’t present in the week or so after one’s period (1). PMS shares similar timing of symptoms, but it is much less severe and only brings mild mood symptoms whereas the mood symptoms of PMDD are many and can be extremely debilitating. 

Recent research shows that PMDD is a chronic genetic condition and may be caused by the body’s abnormal response to normal hormonal changes over one’s menstrual cycle, but more research is needed (2). According to the DSM-5 (the latest diagnostic manual of mental disorders), PMDD affects between 1.8% and 5.8% of menstruators, which could mean that there are approximately 6 million women in the U.S. who suffer from PMDD (1). 

If this resonates with you, you are not alone, and there is help!

 

Justina: Brett, you were given a diagnosis of PMDD as a college student, correct? What was the moment or series of moments when you suspected something was off enough to talk to a doctor? 

Brett: Wow… for me, it was ten years of moments that led me to the right diagnosis from a compassionate and up-to-date physician. 

Around the time I started my period at 11, I first came to meet anxiety and depression. It was so scary to be barely older than a child with dark, obsessive thoughts of hurting myself that haunted me and dread that I’d start crying non-stop anywhere, like in the lunch line at school (which happened, more than once). Although my parents didn’t know much about anxiety or depression, they would go to the end of the earth to help me feel better, and found me an angel of a counselor who I’d see throughout my teens. She recommended I go on a birth control very young, because my moods seemed hormonal, and although I didn’t know it then, that birth control kept me afloat until college. 

College got so much worse. My sadness and anxiety were out of control, even though I did experience some intermittent, even happy times. I began seeing a psychiatrist and taking antidepressants and antianxiety medications, but nothing was helping. It got so bad that I decided to take a semester off from college to go home and be with my parents. While home, my mom got me an appointment with a functional medicine doctor to revisit the possibility that my symptoms were hormonal. He listened carefully to my history and believed that I might have PMDD, something I hadn’t even heard of before. But, I tracked my symptoms over two menstrual cycles (the only way to diagnose PMDD (1) – the Me v PMDD app can help!) and saw that they only occurred from ovulation until a day or so into my period. I had PMDD. That diagnosis was my new beginning…

***I saw a counselor and doctors early on in my struggle with the symptoms of PMDD, and I have my life because of that. So, if you experience symptoms like anxiety, depression, or intense mood swings and feel that you are not able to fully live your normal life because of them, it is time to reach out to your doctor, or see a counselor. We all want to be strong, but sometimes the strongest action is admitting you are in pain, physical, mental, or emotional, and seeking help. There is no shame in asking for help. It can be the help that changes your life for the better.

 

Justina: According to Gia Allemand Foundation, what are the symptoms associated with PMDD?

Brett: The Gia Allemand Foundation is an incredible nonprofit organization advocating for the prevention, treatment, and research of PMDD. I am honored to know the brave women leading this organization and be working with them to develop the Me v PMDD app. 

The Gia Allemand Foundation has many resources for PMDD including this list of symptoms, based on the DSM-5 criteria for diagnosis (1,3).

Symptoms of PMDD

  • Feelings of sadness or despair or even thoughts of suicide
  • Feelings of tension or anxiety
  • Panic attacks, mood swings, or frequent crying
  • Lasting irritability or anger that affects other people
  • Lack of interest in daily activities and relationships
  • Trouble thinking or focusing
  • Tiredness or low-energy
  • Food cravings or binge eating
  • Trouble sleeping
  • Feeling out of control
  • Physical symptoms, such as bloating, breast tenderness, headaches, and joint or muscle pain

***These symptoms occur during the week or two before menstruation and go away within a few days after bleeding begins. A diagnosis of PMDD requires the presence of at least five of these symptoms.

Justina: Having lived with PMDD for years before knowing it, how common do you personally think it can be for a woman to mis-associate the symptoms above with things like "this is just who I am," "this just must be what being an adult must feel like," "maybe I'm not trying hard enough," "it's just PMS-which makes me crazy, no big" ? 

Brett: I think it is very common for women with PMDD (before diagnosis) to think that their symptoms and experience must just be PMS, or because they are somehow weak, or because they need to eat cleaner, exercise more, cut back on caffeine, etc. Many of us put a whole lot of pressure on ourselves to be picture-perfect and go after our goals without making a fuss. I know I did. When I first began feeling debilitating anxiety and depression I felt so ashamed, because to an outsider my life would have seemed perfect. I had so much going for me, so much to be happy about, and yet I was anything but. Sadly, for years, I resigned to the fact that I was just a broken, weak, messed up person. It’s heartbreaking to look back on that, on the years I wasted blaming myself and keeping quiet in shame.

Today, I am on a path of healing in the total opposite direction of blame and shame. I can see my strength now, strength I had all along, and now I focus on sharing my vulnerabilities to encourage acceptance from myself and others. After getting diagnosed with PMDD, I realized that I was fighting a sickness all along, not a weakness. And what do we do when we are sick? We take care of ourselves, we take our medicine, we try to get better. I’ve spent the past year navigating different treatments for PMDD, and at this point I am overjoyed that I have found the right balance of medications, supplements, counseling, and self-care to make my PMDD manageable. 

So, my advice to you if you are struggling with symptoms like these I’ve described, do not resign, do not settle, do not blame yourself, but do fight this fight and know that you are strong. 

 

Justina: If while reading this information, a reader is curious about their own hormonal mood swings what tips do you recommend for how someone can go about asking a doctor for PMDD screening and where do you recommend they find a doctor experienced with treating PMDD?

Brett: If you think you may have PMDD:

  • Track your symptoms! – Please download the free Me v PMDD app to track your symptoms. The app can’t diagnose PMDD definitively, but it makes tracking every symptom of PMDD as simple as it could be, in the palm of your hand, and is easy to share with your doctor. Track what you experience every day. Be curious about your own experience, knowing that you could find that your experience is not PMDD, and that PMDD is different from person to person. Knowing yourself is powerful!
  • Talk to your doctor – not all doctors know about PMDD (something we’re working to change), but please do share your experience with them and the resources and information about PMDD on the Gia Allemand Foundation website including this Clinical Care Help Sheet. To find a doctor that is more experienced with diagnosing and treating PMDD check out the GAF Provider Directory that has doctors around the world recommended by other women with PMDD.

***For help at any step of the way reach out to GAF’s Peer Supporters who are there to answer any question and provide compassionate one-on-one support via chat, email, text, or call for anyone, anywhere, at any time.

***There are also many amazing PMDD support groups on Facebook! Simply type “PMDD” into the search bar and find a group you like or one in your area.

 

Justina: Tell us about the new app you've been developing and how it helps people who have been given the diagnosis of PMDD? When will it be available to the public?

Brett: Me v PMDD is my light in the darkness that is Premenstrual Dysphoric Disorder. After months of tediously tracking my symptoms on paper to reach diagnosis and later evaluate treatments with my doctor, I realized there had to be an easier way, there had to be an app for that. So, we made one. We teamed up with the Gia Allemand Foundation and got to work to build the Me v PMDD Symptom and Treatment Tracker.

With Me v PMDD, menstruators can track all symptoms of PMDD over their menstrual cycle to see if symptoms are in fact cycle-related and to see how different treatments they try affect their symptoms. Users, we call ourselves PMDD Warriors, can use our tracking data to validate our experience, find what works, plan around the tough days of PMDD, and know when extra self-care and support from loved one’s are needed. It’s our mission that Me v PMDD can help Warriors take back control over their cycles and their PMDD.

The app also includes a Self-Love Journal for keeping notes throughout the month on all things PMDD, to vent thoughts and feelings and empower ourselves to stay hopeful and fight as hard as we can. Me v PMDD also links directly to a variety of helpful resources for PMDD as well as to the Gia Allemand Foundation’s Peer Support. 

Me v PMDD is now available for free, worldwide for iOS and Android.

Feel free to reach out and email me anytime at brett.mevpmdd@gmail.com 

Justina: Thank you so much Brett for taking the time to answer these questions! I already downloaded the app to my phone last night and love how COOL and EASY you have make tracking these symptoms. You are doing amazing work for supporting PMDD sufferers and those who need help getting a correct diagnosis!

Sources

  1. Diagnostic and statistical manual of mental disorders, 5th ed. Washington, DC: American Psychiatric Association; 2013.
  2. Schmidt PJ, Martinez PE, Nieman LK, et al. Premenstrual dysphoric disorder symptoms following ovarian suppression: Triggered by change in ovarian steroid levels but not continuous stable levels. Am J Psychiatry. [published online April 21, 2017]. doi: 10.1176/appi. ajp.2017.16101113.
  3. https://giaallemandfoundation.org/about-pmdd/

Additional Resources:

https://medium.com/@borderlinefemme/what-to-do-when-your-pmdd-wont-let-you-do-anything-9d87e0558063

https://medium.com/@brett.mevpmdd/pmdd-what-the-right-diagnosis-did-for-me-541ee13d4938

https://chloebytheway.wordpress.com/2017/05/01/pms-sidenotes/


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Brett Buchert

Co-founder & CEO, Me v PMDD, Inc.

Brett is the mind and heart behind Me v PMDD, a symptom tracking app for anyone fighting through Premenstrual Dysphoric Disorder (PMDD) that arose from her own decade long struggle with the condition. Passionate about mental health, she received her degree in Psychology from the University of Florida and plans to pursue graduate school in Clinical Psychology to continue to advocate for the importance of mental health and fight for better treatments for PMDD Warriors. Brett is also a Peer Support Provider with the Gia Allemand Foundation for PMDD, a former college rower, active rock climber, and cat lover.

Find Me V PMDD Online at: https://mevpmdd.com

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Follow On Twitter:https://twitter.com/MEvPMDD