The Hidden Struggle of Menstrual Disorders
Throughout time and across the world, menstruation has been an inconvenience to most women. Cultural and economic barriers exist that can make it hard to access appropriate menstrual products and health care, and the majority of us deal with a degree of symptoms from cramps to cravings. But for a small percentage, our periods are an ongoing nightmare of life-altering physical, mental, and emotional suffering that affects everyone around us.
Personal Journey: From Puberty to Misunderstood Symptoms
For me, puberty was traumatic alone. As a very sensitive and imaginative child, the prospect of bleeding every month seemed like a decades-long punishment for a crime I didn’t commit. The possibility of becoming pregnant as long as I menstruated was also not something I wanted to deal with, and the onset of my cycle was the beginning of certain mental health issues as well as debilitating cramps. But I wouldn’t get officially diagnosed with endometriosis until my late 30s, and I was never formally diagnosed with PMDD or PME. It turns out the medical and psychiatric industries still don’t take women’s menstrual problems seriously enough.
The Complexity of PMDD and PME: A Struggle Beyond PMS
PMDD, or Premenstrual Dysphoric Disorder, and PME, or Premenstrual Exacerbation, are two forms of extreme PMS. PMDD is said to be a mood disorder, with symptoms that start up to two weeks before a period and resolve once it starts. PME is worsening symptoms that do not resolve once a period begins. I’m still not sure which one I have, as my symptoms have changed over time.
A Path of Misdiagnosis: Navigating Mental Health and Menstruation
Neither myself nor the numerous professionals I saw would connect the dots for years. I regularly experienced severe anxiety, ranging from panic attacks to trichotillomania and depression to the point of suicidal ideation. From my teens onward, I received diagnoses of OCD, Asperger’s syndrome (now called Autism spectrum disorder), Bipolar 2, and more. I also, unfortunately, endured countless traumas.
In my late 20s, my symptoms worsened. I developed extreme fatigue, experienced rage, and had serious self-harm attempts. I eventually figured out that all of this coincided with my menstrual cycle. Thanks to my obsessive brain always wanting to Google everything, I discovered PMDD and PME. While I was glad I had a name for what I was experiencing, like most women with these conditions, my journey was beginning.
Challenges in the Healthcare System: Seeking Effective Treatment
Over the next few years, my treatment became tangled between OB–GYN’s, Psychiatrists, and General practitioners. I was put on SSRIs, mood stabilizers, and birth control. I also tried supplements and different forms of psychotherapy and implemented lifestyle changes. But things didn’t improve, and I sought a hysterectomy.
A former trusted physician’s assistant who knew I was struggling and single asked, “You don’t want any kiddos?” When I brought up the surgery. She also told me that just my uterus would be removed and not my ovaries, which defeats the purpose of a hysto, as the latter are the main culprits of PMDD and PME.
I also had psychiatrists condescendingly parrot the same medications even after I told them they didn’t work. I can’t tell you how demoralizing it is to be let down by those who are supposed to help, even more so when you’re already wanting to end your life each month.
The Road to Chemical Menopause: Exploring Alternative Treatments
With the little hope I had left, I continued researching and discovered the IAPMD website. It is a goldmine of resources, one being a map of professionals who treat these disorders worldwide. This was how I found a doctor who at least took me seriously. She gave me the option of trying chemical menopause, with the possibility that if everything went well, I could proceed with a hysto. She told me about Orilissa, an off-label medication taken in pill form daily. While it is clinically indicated to treat endometriosis, it works by shutting down the production of the hormones LH, FSH, and Estrogen, stopping your period and PMDD or PME.
Discovering Orilissa: A Turning Point in Managing Symptoms
Orilissa has been mostly a magic pill for me. When I first started taking it, I felt as if the hot, heavy weight I had been suffocating under was finally lifted. It was also refreshing to know my symptoms weren’t solely psychiatric or a character flaw. Orilissa doesn’t work for everyone, though; it can be cost-prohibitive depending on insurance. There can also be side effects.
When I had a strange side effect at one point from Orilissa, I briefly went off the drug, and my doctor referred me to specialists and said she didn’t think she could help anymore. At least two of the specialists, while claiming to treat PMDD on their websites, asked me how long I had been trying to get pregnant when I spoke to them. Neither of them bothered to ask basic questions about me or help.
Upon joining a support group for women with PMDD and PME, I discovered I was far from the only woman like myself to experience resistance and difficulty in finding treatment. Some medical professionals will outright deny these disorders exist, let alone provide treatment or a history.
The even sadder reality is that PMDD was only reaffirmed by the DSM as a disorder nine years ago. Women’s experiences of PMS have always been dismissed, as well as women who don’t prioritize motherhood. I’ve been told that many doctors would be unwilling to do a hysterectomy on me because I am childless and in my 30s. Who knows how many women have suffered in silence with this condition since the dawn of time?
Current Strategies and Future Hopes: Living with PMDD and PME
As of now, I have gone back to Orilissa. I also manage my symptoms with vitamins, herbs, progesterone cream, and trauma therapy like EMDR. I’m still waiting on the possibility of a hysto.
There are a myriad of theories of what causes PMDD & PME. They include comorbid conditions like Autism, depression, PTSD, estrogen dominance, and sensitivity to hormonal fluctuations during menstruation. If you think you may have PMDD or PME, I encourage you to check out the IAPMD website and persist as I did. There is hope.
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