For a very long time, my PMDD experience was full of shame and secrecy. Very few knew how I suffered. I could not explain to others “what was wrong with me” because I didn’t know, and at that time, I couldn’t possibly put into words the depths of torture my own mind put me through monthly.

I was half me, half monster. Fully alive for part of the month, and trying desperately to survive myself the other half.

When one of my best friends received a PMDD diagnosis and shared it with me, it was like fireworks went off in my brain. That was precisely what I was experiencing, but I had no idea it was even “a thing” one could have. Yet, from her description and the details she shared, I started to consider that maybe… just maybe… that’s what was happening to me too.

However, I would slog through for six more years on my own.

During that time, I managed my own self-care the best I could, stumbling in the darkness of dysphoria each cycle, hoping to salvage a sense of who I was in both light and shadow. I was desperately lonely to be understood and accepted: by myself, my romantic partner, my friends, and my family.

In December of 2020, I was officially diagnosed with premenstrual dysphoric disorder (PMDD). Using worksheets from the IAPMD website to organize myself beforehand, I cried through the entire visit with my gynecologist, balancing a feeling of righteousness for self-diagnosing, and absolute horror at it finally being fact. I have PMDD!

Since then, it seems like my involvement in the world of premenstrual disorders has ballooned!

I was overwhelmingly fortunate to be chosen for the Patient Insight Panel (PIP), where I was lucky to share with others exactly what my experience has been like. The words that I choked on for years came pouring out as I realized so many other people know this feeling too. Many of us had been misdiagnosed, gaslit, ignored, denied our experiences and our health. We’ve had to compromise aspects of our lives for this disorder. We’ve had to make decisions no one should be asked to make. So many other people had experiences like mine, different but similar, remarkable testaments to our capacity to persevere. 

Incredibly, I was able to further share my firsthand experience, as well as those of the PIP and PMDD people at large, in the IAPMD Virtual Roundtable as a representative on the PMDD Community Coalition (PCC).

What I once hid from others in shame, secrecy, and suffering, I shared openly with doctors, clinicians, researchers, authors, and others. I was heard, acknowledged, and even understood by some, as I stood strong with other PMDD people to accelerate progress toward patient-centered outcomes in PMDD research and practice.

At the risk of sounding melodramatic, participating in the PCC was the best PMDD-related experience I have had to date. The other folks from the PIP who comprised the PCC (Ashley, Ali, Deyjianna, Gina, Heather, Julia, and Wencke) will always have a piece of my heart because of how bravely and openly they shared theirs.

I thought I was alone for a long time and I know I’m not anymore, the PCC showed me that definitively. I am not ashamed anymore. I have PMDD, but PMDD doesn’t have me, and I will share my story if it helps you to eventually share yours.

MEET MELISSA

Melissa Sue Ogden (she/they) is a 600-hour professional yoga therapist specializing in yoga for premenstrual dysphoric disorder. They were supremely fortunate to serve as a member of the PMDD Community Coalition.

Follow Melissa on Instagram @yogaforpmdd | Check out Melissa’s PMDD-specific yoga community on Patreon