My PMDD Story

I have struggled with premenstrual dysphoric disorder (PMDD) for about half of my life. If you haven't heard of PMDD, check out my previous post to learn more. In this post, I'll be explaining more about my personal experience with PMDD. You can watch the video, or if you prefer to read, the blog post below.

PMDD is an extreme sensitivity to the normal changes in hormones that occur during the menstrual cycle. Generally, someone with PMDD feels relatively normal for 1-2 weeks of their menstrual cycle, and terrible for 1-3 weeks (it depends on the person and the total length of their cycle).

For me, it felt like a whirlwind of destruction for half the time, and complete exhaustion and picking up the pieces for the other half (hence the picture for this post being half-and-half). It is emotionally, physically, and mentally draining. Again and again and again. One hundred and eighty times so far, give or take a few.

The Backstory

I had always had anxiety as a child, but once I reached puberty, I began to experience episodes of severe anxiety and depression. I felt overwhelmed and out of control, and struggled with the demands of school, work, and social life. Everything suddenly became more difficult, from maintaining friendships, to handing in assignments, to getting through shifts at my part-time job. I would be able to keep it together at school and work (for the most part) but I would fall apart at home. Those around me chalked it up to teenage angst, but over time, it became clear that I was struggling and that this was a real mental health issue.

I will explain how PMDD has affected my life in-depth in Part 2 (coming soon).

Getting Diagnosed

I wasn't properly diagnosed for at least six years after I started my period. The average time to diagnosis is actually about 12 years, so believe it or not, I lucked out. After many years of ups and downs, my Mom and I figured out that my intense mood swings were connected to my menstrual cycle. When we brought this up to my (3rd) family doctor, they suggested that I might have PMDD.

At the time, there were very few resources on PMDD, and all I had to go on was a printed handout that she gave me. Nowadays, the process for diagnosis is much better defined, check out this link for details.

Trying Treatments

I tried many treatments over the next 15 years. The unfortunate problem with PMDD is that there is no treatment that is specifically formulated for PMDD. All the treatments are off-label, which means that they are treatments targeted for other illnesses, but are used in an attempt to help those with PMDD. It seems that what works for one PMDD patient does not necessarily work for another, leaving it all up to a game of trial and error and making many PMDD sufferers feel like frustrated guinea pigs.

I am not a medical professional, so I won't go too deep into treatments, but you can find evidence-based and science-backed information on PMDD treatment at www.iapmd.org (a great resource that was started much later than my own diagnosis, but has been so helpful for many of us with PMDD).

Personally, on my own treatment journey, I've seen general physicians, gynecologists, psychiatrists, psychologists, psychotherapists, hypnotherapists, and naturopaths (usually multiple of each). I have tried therapy, hypnotherapy, acupuncture, vitamins, supplements, several types of birth control and several types of antidepressants. I've spent thousands of dollar trying to find solutions. The only options I haven't yet tried are chemical and surgical menopause, due to my age and the fact that I haven't yet decided on if I'd like to have children.

It has been a long and arduous journey of trial and error, highs and lows, minor successes and brutal side effects. I have found a combination of treatments that have me feeling better than I have in years, but my treatment plan is still not perfect. Again, as what works for one person may not work for another, I would rather not divulge my own personal treatment plan publicly as I am just one individual.

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A Short Rant: Misinformation, Misdiagnosis, & Mistreatment

Medical Research

I will say that there is a lot of misinformation out there about PMDD. This is partially due to the lack of scientific knowledge about this disorder. Generally, female bodies have been left out of scientific studies because hormones make the studies "too complicated". This is known as medical gender bias. Studies on female bodies take longer, must factor in hormones, and often don't receive proper funding opportunities.

This leaves many gaps in knowledge about female conditions and about how medications interact with female bodies, leaving much of the conversation around conditions like PMDD up for debate. There has also been a push-back about whether using the 'label' of PMDD (which wasn't qualified as a disorder until 2013 in the DSM-IV and 2016 in the ICD) 'pathologizes the female experience'. However, outdated ideas like this do a huge disservice to millions of people that actually suffer from this disorder.

Doctors & Misdiagnosis

Many doctors (including general physicians, gynecologists, psychiatrists, and psychologists) are undereducated on this condition, compounding the fact that it is also under-researched. PMDD is commonly misdiagnosed as bipolar disorder and doctors often prescribe mood stabilizers, which are not recommended for PMDD patients. The IAPMD actually provides patients with resources to take to their doctors regarding proper treatment, and offer additional education to physicians, because they recognize this glaring gap in education.

The Wellness Industry

The double taboo of mental & menstrual health stigma not only has social repercussions, but can also include pill-shaming, which dissuades patients from trying certain or all medications. The wellness industry often participates in this kind of behavior, encouraging natural options where actual medical treatment may be warranted and making false claims about 'quick fixes' or 'cures'.

It is very common for dieticians, nutritionists, naturopaths, self-appointed period experts, and general women's health 'influencers' to label PMDD as a hormonal imbalance, which it is not, and use it as an opportunity to sell their goods and services, including pseudoscientific therapies, diet plans, vitamins, essential oils, and the like.

My Perspective

As someone who has been scammed by wellness influencers before, I want to tackle this problem head on. Although I am technically also in the wellness space as a yoga teacher and am offering yoga as a method to cope with the impact of PMDD on one's life (using scientific evidence to support this), I would never claim yoga as a 'cure' (huge red flag word!) for PMDD.

I believe that yoga can be a supportive practice for those with PMDD, particularly related to self-esteem and body image. Personally, the mental health benefits of yoga have been the most powerful for me, and I'd like to share that with others. I feel that it is my responsibility to make it clear that yoga is not a treatment or cure for PMDD. I intend to support PMDD Warriors on their own journey of finding what works best for them and helping them to advocate for their needs.

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Rant Over:

Back To Regularly Scheduled Programming...

How I Cope With PMDD

As I said, I don't think it is my place to discuss my personal treatment plan, but I can tell you about some of the things that have been most effective for me.

1) Educating Myself

The number one thing I learned in my own journey is that I needed to be knowledgeable about my disorder. I researched PMDD endlessly as new information came out. I started out reading articles about PMDD on health websites like uptodate.com, psychcentral.com, healthline.com, and verywell.com. I learned about The International Association for Menstrual Disorders (IAPMD) and found them to be a wonderful and unbiased resource for all things PMDD and PME. I then turned to more medically-minded websites from Harvard Health, Johns Hopkins Medicine, The Cleveland Clinic, and The Mayo Clinic. In university, I used my library access to read online medical journal articles about the latest PMDD studies. Essentially, I became my own expert.

2) Being Persistent With My Medical Team

As I mentioned, many doctors are undereducated about PMDD. Chances are, they have possibly had a small section of a single lecture dedicated to PMS and maybe including PMDD in medical college. If they're very dedicated doctors (as they should be) and keep up with medical journals and DSM updates, they may have read a study or two on PMDD specifically.

However, as is the case with many chronic illnesses, those with lived experience of PMDD and who dedicate their lives to finding solutions for themselves often know a lot more about their condition than their medical providers. Once I learned that I needed to be my own best advocate, I was empowered to ask for evidence-based treatments, ask for second opinions, and even 'fire' my providers in search of someone with better knowledge (or even a more compassionate bedside manner!)

3) Being Resilient & Open To Trying Treatments

It can be really hard to try treatment after treatment, especially in the face of severe side effects and disappointment when they don't work as planned. It can be really easy to get discouraged and lose hope. My therapist helped me to realize that my strength was in my resilience; the ability to get up and keep trying. I know it can really suck to go though not only your illness, but the ups and downs, hopes and disappointments, but eventually something will stick.

4) Practicing Yoga & Meditation

Although I still struggle with PMDD sometimes, I have learned a lot about it and about myself in the process. Practicing and teaching yoga has been helpful for me in my journey of self-compassion. It hasn't treated to my PMDD, but it has made all the difference in how I cope and how I see myself. It has helped me to change how I feel about my body, my mind, and my purpose. In the next few weeks, I'll be posting more about why yoga is helpful for PMDD, so stay tuned.

As I mentioned, Part 2 of this post will be coming shortly and will discuss in-depth the 4 main ways that PMDD has affected my life and the lives of other PMDD Warriors. I will also be sharing a resource library with all of my favourite PMDD resources with my mailing list, so please join if that interests you.

If you identified with this story or think you know someone who could have PMDD, please share - this information could make all the difference.