Hi, everyone! My name is Cindy Lopez Smith. I am a wellness and PMDD advocate and I am so excited to share my story with you all. I’m a Wellness Management student, which keeps me pretty busy, and it’s the reason why this story is finally posted on my summer break. I am a Peer Support Provider for the International Association for Premenstrual Disorders and USA Project Manager/Coordinator for Vicious Cycle: Making PMDD Visible– a global patient led awareness project. My goal is to raise awareness throughout the general public and the medical community. I hope to inspire others to speak about the condition and give them the motivation to do PMDD awareness work within their own communities.
What is PMDD? Premenstrual Dysphoric Disorder (PMDD) is a cyclical, hormone-based mood disorder affecting around 1 in 20 women and AFAB individuals of reproductive age with symptoms arising during the premenstrual, or the luteal phase of the menstrual cycle and lasting until around the onset of menstrual flow (for some it continues on for a few days into the bleed!). 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.
In March 2017, I had planned to take my life. I was tired of not knowing what was wrong with me and tired of doctors giving up on me. I started to notice that I would get suicidal ideation, debilitating depression, rage, severe mood swings, severe anxiety, and fatigue around my period. I had asked my primary doctor at the time if there was a connection and she responded that “PMS doesn’t exist”. I was hurt and upset that she wasn’t listening to me despite having a checklist of PMS/PMDD symptoms in my hand, but she wouldn’t even look at the paper. She didn’t want to see the possibility that my periods had a connection with my mental health. I fired her and became my own health advocate. I always tell people to advocate for their own health because YOU are the only one that knows your body 24/7. A doctor barely gets a glimpse of your symptoms that you live daily.
I am a military spouse, and we just moved to Upstate New York. I was so tired and scared that I wouldn’t find a doctor who would listen to me, but luckily, I found a counselor in Northern New York who knew and cared for clients who had PMDD. She said I had all the signs of PMDD. It can be challenging to get diagnosed with PMDD because a lot of doctors misdiagnose or are not aware that PMDD exists. There is no current blood or saliva test that can provide a definitive diagnosis of PMDD, however, blood tests to rule out other possible illnesses (such as thyroid issues) should be run. To gain a PMDD diagnosis you will need to chart your symptoms for at least 2 months. To track, you can get a paper copy from the IAPMD website or use an app such as www.mevpmdd.com.
Below are the criteria to be diagnosed with PMDD. Over the course of a year and during the menstrual cycles, five or more of the following symptoms must be present. These symptoms occur a week or two before your period begins and disappear within a few days of the onset of bleeding.
Criteria for PMDD:
- Markedly depressed mood, feelings of hopelessness, thoughts of suicide or self-deprecating thoughts (more than just feeling sad or “blue”)
- Marked anxiety or tension (feeling “keyed up” or “on edge”)
- Marked affective lability (severe mood swings, feeling like Dr. Jekyll, Mr. Hyde; feeling suddenly sad or extremely sensitive to rejection)
- Persistent and marked anger or irritability or increased interpersonal conflicts
- Decreased interest in usual activities (work, school, friends, hobbies)
- Subjective sense of difficulty concentrating
- Lethargy, easily fatigued or marked lack of energy
- Marked change in appetite, overeating or specific food cravings
- Hypersomnia (sleeping too much) or insomnia (difficulty initiating sleep, middle of the night or early morning waking)
- A sense of being overwhelmed or out of control
- Physical symptoms, including breast tenderness or swelling, abdominal cramping, headaches, joint or muscle pain and others
- The disturbance markedly interferes with work, school, or usual activities and relationships with others. (It’s important to distinguish PMDD from less severe PMS –is there a significant change? Do you avoid social events, are you as productive and efficient?)
As for my treatments, I’m seeing mainstream and holistic doctors. I meditate, mostly eat healthy, work out, and journal. I’m in support groups that inspire me when I’m at my lowest, and I give back when I’m at my happiest. There is currently no ‘one size fits all’ when it comes to treatment so there is a lot of trial and error and for some, it takes time to find your protocol. What is currently working for me is using Bioidentical Progesterone and eating a low histamine diet because for some of us with PMDD there is a connection with histamine intolerance.
- Lifestyle changes
- Diet and Nutrition
- Alternative Medicine
- Homeopathic Medicine
- Oral Contraceptives
- Progesterone Therapy
- Mood Stabilizers
You can read more about these here: www.iapmd.org/treatment-options
You may feel like giving up when trying to find the right treatment for you. Since discovering what works for me, I am a whole different person. Before when I was unwell, I did not think I could get published or have the courage to go back into education in my 30’s, but that has changed after being diagnosed with PMDD and finding doctors who are willing to listen and be educated on this little-known disorder. We are making progress, but there are always bumps on the road, but I am here ready to advocate and show the world that I can have a disorder and kick-ass in the world. Never give up.
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.