– BY CINDY LOPEZ SMITH –
When I first started my period at age 13, I did not have anyone that I could talk to about periods. My mother was from the Philippines and we never talked about it because Menstruation talk was a taboo in our native culture. I remember learning about periods from friends, magazines, and the back of the tampon box! No one spoke to me about the emotional, physical and mental health shifts that happen during our cycle.
I’d always known that something was wrong. I was experiencing bouts of intense mood swings, rage, suicidal ideation, anxiety, hopelessness, depression, and sensitivity to sounds and light but I did not know what was causing it and I assumed it was a normal thing that teens went through because friends and magazines said that feeling down was part of PMS and no one ever talked about it. I did not realize that not everyone else felt the severe symptoms I did, so I did my best to hide them.
‘I cried and grieved for the years that I lost trying to prove to my doctors that my symptoms were real’
I became desperate for answers as my symptoms became more severe. I began looking through Facebook support groups to find relatable health issues, and by some chance, a young woman talks about her symptoms. She talks about a disorder called Premenstrual Dysphoric Disorder, which sounded a lot like what I was going through. I joined a PMDD support group on Facebook that showed me thousands of stories of pain and struggle and I related to them all. I cried and grieved for the years that I lost trying to prove to my doctors that my symptoms were real.
PMDD is a condition which affects 1 in 20 women and AFAB individuals and causes serious negative symptoms so how could it be that it took me until my 30’s to learn about PMDD?
Premenstrual Dysphoric Disorder (PMDD) is a cyclical, hormone-based mood disorder affecting around 1 in 20 women of reproductive age with symptoms arising during the premenstrual, or the luteal phase of the menstrual cycle and lasting until the onset of menstrual flow. PMDD causes extreme symptoms that can affect daily functioning and personal relationships and even push someone to end their life rather than continue to experience their symptoms.
‘There are no current blood, x-ray or urine tests that can provide a definitive diagnosis’
It can be difficult to get diagnosed with PMDD because doctors often misdiagnose, never heard of it, or don’t believe their patients have it. There are no current blood, x-ray or urine tests that can provide a definitive diagnosis of PMDD. You will need to chart your symptoms and receive other labs to rule out other possible illnesses. It took a second healthcare professional to realize that I had PMDD after seeing me when my symptoms were at their peak and learning about my medical history.
My first doctor ignored me when I said my symptoms appeared before my periods, and I begged her to look into it. I even showed her a symptoms checklist that I marked which showed that I had signs of PMS or PMDD. She informed me that PMS was not real and to just take the pills she was offering. I was devasted that I wasn’t being heard and I did take those pills which made me really sick. If I didn’t have the courage to fire her and find another healthcare professional to listen to me I wouldn’t be alive today to bring awareness for the PMDD community.
‘Recent research shows that up to 30% of those with PMDD attempt to take their life, yet many doctors have never heard of it’
I was diagnosed with Polycystic Ovarian Syndrome in my early 20’s and it was a battle to get that diagnosis, but it was a warzone trying to get diagnosed with PMDD.
Recent research by IAPMD shows that up to 30% of those with PMDD attempt to take their life, yet many doctors have never heard of it. This is where the importance of PMDD awareness comes in. Awareness teaches people to understand and believe that this issue is real. It brings this issue into light and provides a voice for those suffering in secret, in fear, and even shame.
PMDD awareness reduces the stigma around menstruation, mental health, and pushes for proper diagnosis and treatments. It allows healthcare professionals to be better equipped in treating patients with PMDD but most of all I hope PMDD awareness teaches them to become better listeners and advocate for their patient. It allows organizations like the International Association of Premenstrual Disorders to get the funding they need to provide peer support in their Peer Support & Crisis Intervention Program and for Vicious Cycle: Making PMDD Visible continue their work in raising awareness.
Awareness is education and knowledge is power
It empowers those affected by PMDD and loved ones who experience this disorder with us. Awareness is a powerful tool and it saves lives. It saved mine when I went through PMDD Facebook support groups to find answers and I got them. It gave me a community filled with strength, courage, love, and understanding. I’m still alive because of it and hope to continue my work in bringing awareness to the PMDD community. And through awareness, it gave me the courage to pursue a degree in Health Promotion and Education and I aim to specialize in PMDD so I can help others going through this difficult journey.
April is PMDD Awareness Month
Organizations around the world work to raise awareness and advocate change for those affected by Premenstrual Dysphoric Disorder. For more information: iapmd.org, iapmd.org/peer-support, viciouscyclepmdd.com.
About the author
Cindy Lopez Smith is a Wellness Management student, Peer Support Provider for the International Association for Premenstrual Disorders (IAPMD) and USA Project Coordinator for Vicious Cycle: Making PMDD Visible – a global patient led awareness project.
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