Many women experience symptoms such as mood swings from PMS. But for about 6% of women, there’s a much more severe condition called Premenstrual Dysphoric Disorder that causes more than just irritability before their period. For women with PMDD, their symptoms last one to two weeks every month, affecting their ability to maintain healthy relationships, keep a job and even get out of bed. The symptoms are lengthy, with the most common being depression, anxiety, fatigue, binge eating and suicidal thoughts. But once their period comes, they often feel like completely different people. They’re happy, positive, energetic and excited about life. Until two weeks later when it starts all over again.
As a woman who personally struggles with PMDD, this issue is close to my heart. I spoke with Amanda LaFleur who runs The National Association for Premenstrual Dysphoric Disorder in the United States to ask her about NAPMDD and what she’s doing to help women with PMDD regain some footing in a society where the medical system often thinks it’s all in our heads. Luckily for Amanda, she’s had a hysterectomy and no longer struggles with PMDD – but for many women including myself it simply isn’t that easy.
1. Can you tell me more about why you started NAPMDD?
I started NAPMDD because at the time there was no other organization in the United States and Canada offering support and services to women with PMDD. So many of us were just suffering online in Facebook groups and forums feeling like no one believed us or understood us. We needed a united front for physicians and even just our loved ones to take our suffering seriously.
2. What kinds of things are you doing to raise awareness of PMDD?
In addition to our presence online, we’ve hosted a number of awareness events in the real world. Just this past August we had our first National Conference where women and clinicians joined us in Colorado and online to learn about treatment options for PMDD as well as find support. It was such a powerful and emotional event because so many women with PMDD have felt isolated. Which is sad because there is a higher suspected rate of PMDD among women in their reproductive years than there are women with say diabetes. Women just need opportunities to discuss their symptoms in a safe and supportive environment. I was (but no longer am) surprised to find that when a woman starts talking about her suffering with PMDD how many other women come forward who have either been suffering in silence or didn’t realize that their suffering had a name.
We look forward to doing many more real-world events in 2016 and start bringing women off of Facebook and together in their own communities. We want to join this growing movement of removing the stigma of menstruation and premenstrual syndromes. It’s time we brought back the concept of Red Tents and truly giving women the best education and care for their unique needs.
3. What still needs to be done in the medical community?
Where to begin! Above anything, clinicians need to let go of their own bias of PMS and PMDD. We’ve heard horror stories of women seeking professional help for their severe PMS and PMDD and being laughed at or told to “go shopping”. Even worse, women seeking help are being misdiagnosed with bipolar disorder and given medications that are grossly inappropriate for their condition. These medications have been shown to increase suicidal behavior and have long term affects on women’s mental and physical health.
When clinicians fulfill their oath to provide care based on the latest information and research they themselves can become educated on the signs and symptoms of PMDD as well as what works to treat it. Doctors have to especially let go of the myth that the first line of defense for PMDD is oral contraceptives (or birth control pills). Studies both clinical and anecdotal time and time again have shown that oral contraceptives can make symptoms worse. Not to mention the inherent side effects of birth control pills themselves.
4. What has your experience been treating your PMDD with a hysterectomy?
Honestly, it was the best decision I could have ever made. For me that is. I was done having children and all my other options had failed. My journey post surgery hasn’t been that long and there has been bumps along the way (adjusting to a life without PMDD and the relationships affected by it, lingering anxiety, etc), but I no longer live my life as a slave to by ovulation cycle. I finally feel free of my own body’s abnormality.
5. Do you have anything else you want people to know about PMDD?
Women are so minimized when we talk about our hormones. So often we’re patronized as “being on the rag” when the truth is our lives can be quite dictated by what our bodies are naturally made to do. Women are expected to be stronger than our physiology when so many of us are secretly wanting to kill ourselves from the emotional and physical pain pre-mensturation and menstruation can cause.
For more information on NAPMDD click here.
As well, Amanda is working with me on a global documentary called The PMDD Project, featuring women around the world who struggle with the condition. If you’d like to become involved, please email me at firstname.lastname@example.org.