In or around 2009, I was diagnosed with PMDD, or Premenstrual Dysphoric Disorder. At the time, I had never heard about it, and actually, I did not think it was a big deal. I think I actually looked at my ob/gyn like, are you kidding? But, she put me on an SSRI, which is the first line of defense against PMDD. The SSRI worked for me for years, until I became pregnant the first time.
“PMDD is a severe negative reaction to the natural rise and fall of estrogen and progesterone. It is a suspected genetic disorder with symptoms often worsening over time and around reproductive events including menarche, ovulation, pregnancy, birth, miscarriage, and menopause. Women with PMDD are at an increased risk for postpartum depression and suicidal behavior. Many, but not all, women with PMDD have a history of sexual trauma or depression.”The International Association For Premenstrual Disorders (IAPMD), iapmd.org
If you are unfamiliar with PMDD, it is basically PMS on steroids, with symptoms mimicking mental illnesses like bipolar disorder–so much so that women are often misdiagnosed as having bipolar disorder, or similar mental health conditions. With PMDD, women start to experience symptoms a week prior to the start of their period, but often it can start two weeks before, which is my experience currently. Symptoms include mood swings, sadness, anger, anxiety, hopelessness, or panic attack, excess sleepiness or insomnia, irritability or crying, appetite changes, bloating, depression, diminished interest in usual activities, economic or social dysfunction due to symptoms, fatigue, feeling overwhelmed, food craving, headache, increased sensitivity to rejection, lack of concentration, self-critical thoughts, water retention, or weight gain. Again, many of these symptoms are experienced hyped up because of the severe reaction to the hormones. I cannot adequately express how debilitating these symptoms feel for two-plus weeks out of each month.
In 2014, when I became pregnant the first time, my emotions were off the chains. I was irrationally thinking, angry, crying a lot, and experienced a significant disdain for my wonderful life (a new husband, a new house, a good job, baby coming, etc). My emotions were far beyond normal pregnancy hormones. So, we increased my SSRI, sertraline, to 200 mg. That basically worked. But then my baby was born after a traumatic labor and delivery, and I suffered from severe anxiety and postpartum depression.
In fact, my emotional inability to function was so significant during pregnancy and after birth that my husband and I contemplated not having any more kids. Another emotionally unstable pregnancy like that felt treacherous. When I did become pregnant with my second baby, I had conversations with my ob/gyn about having a hysterectomy after the birth. Knowing that my hormones were out of control, I had no reason to think anything would change. The doctor wouldn’t do it. My mom experienced similar struggles with hormone shifts, and after a hysterectomy (for another medical reason), she was cured of the extreme emotional symptoms brought on by PMDD. (Interestingly, PMDD is shown to be genetic!) I felt in my body that a hysterectomy was the right, best choice for me, because I am sensitive to hormonal shifts, prone to depression and anxiety, and respond poorly to oral contraceptives. So, after my second birth, I had my tubes tied (which did nothing emotionally, but was able to prevent further pregnancies).
In the last two years, I have started to feel even more unsettled. With each pregnancy the PMDD symptoms became worse and slowly continue to intensify with every month. This is not surprising as research has shown that not only is PMDD likely genetic, but it worsens with pregnancies, birth, menopause and other reproduction-related situations.
In any given episode, I may experience random bouts of rage or anger, irritability or mood swings, a foggy head and insomnia. I can be in the kitchen preparing dinner and suddenly scream at my kids for something I would otherwise ask them not to do. In some of these moments, it feels as if a demon has taken over my body. I begin to hate myself. I’m aware of my anger or irritability and mood swings, but I can’t control them. And that is the scariest part of living with PMDD.
In the last year, we have had several changes in our lives: selling our house, buying a new house, putting both girls in daycare–and trying to pay for that, working more than full-time (my husband), working full-time and starting graduate school (me), behavioral challenges and appointments for my older daughter, to name a few. I attributed the significant shift in my emotions to these big changes, particularly, difficulties with my older daughter. I started to really hate and resent my role as a mother.
I hate who I am with PMDD.
My feelings and emotions are uncontrollable. I can suddenly rage (yell) over the smallest, most ridiculous things, especially at my girls, and then wrap myself in an immense amount of guilt for it, telling myself how horrible I am. Yelling is an awful form of abuse, even if unintentional; it’s damaging–possibly worse than physical abuse. I can’t imagine talking to another person the way I talk to myself during these times. And I would never tolerate anyone yelling at my kids the way I have. In a quiet state of mind I can see that when I’m experience PMDD symptoms, I don’t hate being a mom, I hate not being a GOOD mom.
“Sarah, this is situational. You need to change your situation.”
In late October 2018, I went to my psychiatrist and told her that the SSRI medication was not working anymore. Could she increase it, or give me something different? Could I supplement Klonopin again until this gets under control? (Klonopin is a tool I used carefully and successfully in the past without any addiction issues.)
“Sarah, this is situational. You need to change your situation.” She literally said that to me. No changes in medication. I had to change my life. A life with situations that I have very little control over. I feel like I walked out to my car that day like Eeyore–head hung down. The only situation in my life that I could change, literally, was quitting graduate school. So I did. Halfway through the quarter, getting a 4.0 in my classes, I applied for a medical withdrawal and leave status. (I tried to go back winter quarter, but that didn’t last long, either–and I enrolled in no courses this spring quarter–I’m not literally insane! Ha!).
Since October, I have pushed through–but not without consequences. In my difficult weeks, I see my children cautious of me. I know my husband feels he can’t talk to me, and in general I engage with my girls and husband as minimally as possible. I am not a kind and caring mother or wife during these weeks. Can you imagine how my family feels during this time?
In February 2019, my ob/gyn put me on oral contraceptives, which are the second line of defense against PMDD. I was hesitant because I have a history of poor response with OCs–they don’t work well with my chemistry. But the thought on OCs is that they can stop your period, thus stop your ovulation, which then prevents the hormones for releasing and your body responding to them. Do you know how excited I was to potentially not have a period anymore AND be cured of this emotional nightmare? So excited. Sadly, as I expected, the OC made me physically ill (as if I was pregnant), and debilitated by that, I had to stop taking it.
The next treatment options are gonadotropin-releasing hormones (GnRH), which are short-term solutions (may be used no more than six months) and usually require a hormone add-back. Following that is a total hysterectomy, which also requires a hormone add-back.
I wish I could justly express the emotions I experience, the depth of despair, the feelings of being out of control, the ugly hate in my heart, and the harmful self-talk during these episodes. There is a reason this disorder causes attempted suicides in 30% of women who are diagnosed with PMDD. Of five million women, 750,000 of those will attempt suicide. That is a lot.
Upon doing a self-screen, now–eight years after my initial diagnoses, I can say YES to every question without fail, without a blink of the eye. It’s as if someone sees into my soul when I read that list. And yet, here I am, as recently as this week unable to find a medical professional who can help me, now that my first and second lines of defense against PMDD are no longer working. In fact, the ob/gyn I saw this week recommended I start progesterone OC; however, “recent studies show that those with PMDD may have an increased sensitivity to this particular hormone“!
We need more researchers, more knowledgeable and supportive medical professionals, and definitely more people raising awareness about this dis-ease.
Quality of Life
What this medical issue comes down to is QUALITY OF LIFE. Not just quality of life for me. Quality of life for my children, my husband, and my pets (I yell at the dog a lot, poor guy!). It’s an issue of giving women rights to mental wellness, safety, and whole health for their lives and their families.
Here is a chart that shows my quality of life in one month, currently, with PMDD.
What else am I doing to help myself?
I should add that I am seeing a counselor. I eat extremely healthy (usually proteins, vegetables, fruit, some dairy, and few carbs) and drink a lot of water. I do mindfulness practices when I can, but this disorder–or dis-ease as it should be called, can really inhibit me from having a clear head, to think properly and rationally, to think at all, to engage with myself—let alone others, to make right choices, and I experience a great deal of self-hate. It’s a tall order to practice self-compassion and mindfulness under these conditions.
I have an appointment with my ob/gyn to persuade her to give me a total hysterectomy; OR to try gonadotropin-releasing hormones (GnRH) for a month. If the GnRH works, it will put me in a chemical menopause, and if it “cures” my PMDD that month, then it’s likely a total hysterectomy (removal of my entire reproduction set, including ovaries) will also cure it. It’s possible I will have to “shop around” for a doctor who will agree to these final options, which is not ideal. I feel I need to advocate for women who experience PMDD, because despite its debilitating symptoms, despite its high attempted-suicide rate, doctors still are refusing to give women whose bodies do not respond positively to PMDD first- and second-line treatments, the cure. And the cure is a total hysterectomy.
I have an appointment with a psychologist who I hope will help me navigate this process and support me. How much suffering do medical professionals expect before they listen to a woman who knows her body and has no control over the reactions it has to hormones? I am planning to see a nutritionist as well to fine tune my eating habits. Proper nutrition and WHOLE, REAL FOOD does amazing things for our bodies!
It’s ridiculous that it’s so hard to find someone to knows about this condition and can treat it appropriately. Sharing my experience with other women helped them, and so I want to share this here now, too, because I hope maybe it will help you, or your mom, sister, wife, friend, cousin, niece, grandma, granddaughter–any woman who experiences this horrific dis-ease.
We all deserve a higher quality of life than PMDD provides.
And please pray or hold positive thoughts for me, that I am able to find a doctor to provide me with a total hysterectomy. It truly is the ONLY cure.
If you or someone you know is experiencing thoughts of suicide, call the
National Suicide Prevention Lifeline at 1-800-273-8255. This line is available 24 hours everyday.
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