PMDD – Misunderstood, Misdiagnosed, Devastating

All italicized quotes in this piece come directly from women who have suffered with PMDD. A big thanks to the women who volunteered to share their stories for this essay. Vignettes are of fictitious women; any similarities to actual people is coincidental and does not represent disclosure of any personal information.

Originally published on Medium.com

Andrea is a married mom of two with a successful career and an easy-going disposition, but she becomes erratic for ten days each month before her period. Her moods can change abruptly, from detached states, where she minimally engages with family, to long crying jags that terminate in furious eruptions, to volatile outbursts, where she might throw something with minimal provocation. During these premenstrual episodes, functioning personally and professionally is very difficult, and Andrea has used up all of her vacation days on particularly severe days. Sometimes her partner even insists that she stay at a hotel so as not to scare the children.

Since I was 13 years old I have not ever been able to count on mental stability. I knew that part of each month…I would feel crazy. I don’t use that word flippantly. I would feel like another person. One I did not want to feel like.

As many as 90% of women have PMS (Premenstrual Syndrome), which is often experienced as cramping, bloating and some mild irritability for a day or so premenstrually. Conversely, 3–8% of women, like Andrea, suffer from premenstrual dysphoric disorder (PMDD), a biologically rooted condition causing excessive sensitivity to regular cyclical hormone changes. Some portray PMDD merely as a more severe form of PMS, but this is a false equivalency. PMDD, by definition, presents with symptoms that are severe enough to seriously impact daily life, work, school, and interpersonal relationships. There is no demonstrable negative impact inter-personally or professionally from PMS.

I would schedule [my life] around them [symptomatic days premenstrually]. I knew I would get very depressed, and things would seem bleak, but as soon as my period came, I would feel “normal” again.

Women of reproductive age, anywhere from menarche (their first period) to the onset of menopause, typically experience a menstrual cycle that lasts on average 25–30 days. The monthly cycle has two parts — the first is called the follicular phase, which begins on day 0 (first day of a period) and ends with ovulation, which most commonly occurs on day 16. The length of the follicular phase can vary from roughly 11 to 26 days. During this phase, women with pure PMDD are not symptomatic and feel like their normal selves.

The latter part of a menstrual cycle is called the luteal phase, and it begins with ovulation and classically lasts fourteen days until the onset of bleeding. The length of the luteal phase can be longer or shorter than two weeks, depending on several factors, including age, weight and BMI, ethnicity, and stress, among others. Women with PMDD are symptomatic during part or all of the luteal phase. On average, women with PMDD suffer for seven to ten days before menstruation. Symptoms resolve within a day of bleeding. Women must experience at least 5 of 11 diagnostic criteria during the symptomatic days premenstrually, including significant mood changes. A formal diagnosis of PMDD also requires two or more months of documented symptoms recorded using the Daily Record of Severity of Problems (DRSP).

I was twelve years old, and I got my period for the first time. After that, the roller coaster ride began. As time went on, two weeks before I got my period, I would say to myself, What’s wrong with me?” “Why am I in this dark place.” The light would switch on and off, and it just wouldn’t stop.

My experience with PMDD began when I was 16 or 17, and I started noticing mood swings and a complete lack of control of my emotions and impulses.

Commonly, women with PMDD will spend the asymptomatic follicular phase attempting to undo the damage done during the symptomatic luteal phase of the previous cycle. Then, like clockwork, symptoms return during the luteal phase. Despite their best efforts, women find themselves wrecking relationships and torpedoing job performance, and if they are not treated, life can continue like this until menopause. Unfortunately, getting appropriately diagnosed and treated often takes years, as evidenced by many of the included anecdotal snippets.

I finally googled PMS paranoia, and the first thing that came up was an article with the traits of PMDD. I fulfilled every single category and finally knew I had diagnosed myself.

Like her mother, Bethenny has a long history of depression, with symptoms that worsen notably before her period. She found an antidepressant that improves her symptoms for much of the month but still feels depressed before her period. Her doctor doesn’t know why and seems to minimize her symptoms. Her appetite changes, and despite feeling tired all day, she struggles to fall asleep. Her erratic behavior and bursts of aggression have ruptured her relationship with her sister, caused her to snap during a staff meeting, and precipitated the loss of an important client. Even Bethenny’s mother, who suffered similarly before menopause, has reached her wit’s end.

So much of my young adult life was spent suffering, most of which I equated to being weak and overly emotional. Even though I described my symptoms to all of these doctors, including psychological symptoms, they never diagnosed me.

There were many instances at work where I could not hide the suffering. Performance was slipping, I had to call out or leave early on numerous occasions, and I couldn’t exactly articulate what was going on with me, considering I had no idea what I was experiencing.

Bethenny is experiencing a primary depressive disorder along with PMDD. It’s important to tease apart PMDD from Premenstrual Exacerbation (PME), which is when women have a mood disorder like major depression or generalized anxiety that is exacerbated before their period. PME classically mimics PMDD but will resolve with treatment of the underlying mood disorder. If Bethenny was suffering from PME, then treatment of her depressive disorder would also address the premenstrual mood changes, but her diagnosis is instead both major depression and PMDD.

As women, we go through a wide spectrum of experiences that we often don’t fully understand. The fact that many other providers did not consider a link between menstruation and the symptoms that were presenting in a cyclic manner often frustrated and disheartened me.

Unfortunately, medical school and residency training in psychiatry, internal medicine, and OBGYN rarely provide extensive, adequate instruction about PMDD, which was recently added to the Diagnostic and Statistical Model of Mental Disorders (DSM V) as a formal diagnosis. Universal acceptance of PMDD has not come easy despite this legitimizing recognition. Women often have to fight for proper diagnosis and treatment, and in the process, face many skeptics who malign them as “histrionic,” “high strung,” or “needy,” among many other pejorative terms.

The stress was unbearable to deal with; I was ready to commit suicide. My mom thought it would be a good idea to see my doctor. I will never forget the words that came out of his mouth. “She just wants attention and is spoiled.” I was speechless.

Because many PMDD symptoms overlap those of Major Depressive Disorder (MDD), it is considered a type of depression, but the root causes of each are very different. While depression is primarily due to an imbalance of neurotransmitters, PMDD is engendered by an inappropriate brain response to very normal premenstrual hormonal changes.

In the late 90s and early 2000s, I saw so many doctors, OBGYNs, and therapists who could not help. I was told a bunch of times I was depressed, I didn’t have a choice; this was out of my control. I just had to accept that this was part of my DNA.

The most significant risk factors for PMDD are a personal history of a mood disorder such as depression or anxiety, age 20s-30s, a family history of PMDD, and life stressors.

The underlying pathophysiology of PMDD is complicated, polymorphic, and only partially understood. A detailed exploration of all of its possible etiologies is beyond the scope of this article. Still, in brief, genetics, sensitivity to specific hormones, and early life trauma may be involved.

In PMDD, the central nervous system (that controls your fight-or-flight mode, for example) may be more sensitive to a particular category of hormones called neuroactive steroids (NAS). These include the female sex hormones estradiol, pregnenolone, progesterone, and its metabolite, ALLO (allopregnanolone).

ALLO, just like alcohol and benzodiazepines, acts on GABA receptors in the brain, inducing relaxation and minimizing anxiety. Women with PMDD have lower levels of ALLO during the luteal phase. They may also have a quicker drop in progesterone premenstrually, creating a hormonal withdrawal that may cause moodiness, irritability, and anxiety.

Functional MRI and PET scans find differences in brain structure, especially in the dorsolateral prefrontal cortex. Furthermore, repeated or chronic life stressors, such as childhood abuse may predispose a woman to PMDD by desensitizing them to the calming effects of ALLO.

Ultimately, most women present in my office because, like Andrea and Bethenny, they’ve reached a place where an inability to control their emotions has seriously impacted their relationships and lives. Many have sought help elsewhere but have been chastised, marginalized, and had their experiences invalidated by clinicians who lacked the proper training.

As I got older, my physical and mood symptoms got worse. Monthly suicidal thoughts, fluctuations in mood, fatigue, binging, bloating, crying spells, panic attacks, and depression. The question was, why? I’m 47 years old and exhausted.

SSRIs (Selective Serotonin Reuptake Inhibitors) like Prozac (fluoxetine, Lexapro (escitalopram), Zoloft (sertraline), and others are first-line PMDD treatments because they boast a 60–90% response rate in many studies. Alternatively, some women opt to take an oral contraceptive pill (OCP) to stop ovulation. A monophasic OCP has a constant hormone level that overrides the body’s natural hormone fluctuations and improves or alleviates PMDD symptoms in roughly 50–60% of women. Many women opt to miss their periods altogether on birth control pills by taking them continuously and skipping the placebo week to make life easier. Some women find that the combo of an SSRI and a monophasic OCP work best.

As discussed above, women with pure PMDD are only symptomatic for the days leading up to their period (luteal phase). Symptoms usually resolve almost immediately with the onset of menses. These women, like Andrea above, benefit from so-called intermittent dosing of an SSRI, meaning they only take medicine on days when they are symptomatic. For most women with pure PMDD, taking an SSRI will immediately alleviate symptoms without side effects or withdrawal. In contrast, when taken for depression or anxiety instead of PMDD, these same medications may have side effects, often require many weeks for full efficacy, and frequently cause transient withdrawal symptoms upon stopping, especially if done without a taper. These stark differences are likely due to the same medications working differently on different parts of the brain.

I found a new psychiatrist, and she confirmed my diagnosis [of PMDD] and put me on Prozac, which immediately changed my life!

Women with PME experience premenstrual exacerbation of symptoms caused by a primary mood disorder like Major Depressive Disorder (MDD) or Generalized Anxiety Disorder (GAD). These women improve by treating the underlying mood disorder with consistent daily dosing, called continuous dosing.

In contrast, women with a mood disorder and PMDD often need to take a baseline (continuous) dose of an SSRI to address the mood disorder and a higher amount during the luteal phase to control PMDD symptoms. This is called semi-intermittent dosing.

Women with PMDD who cannot tolerate SSRIs, such as those with bipolar disorder, have fewer treatment options. While the data is less robust, there is clinical support for using the mood stabilizer Lamictal (lamotrigine) or the atypical antipsychotic Seroquel (quetiapine) to help treat PMDD symptoms.

Rarely, in more severe cases where SSRIs and OCPs are ineffective, women experiment with GnRH analogs (Gonadotropin-releasing hormone) such as Lupron to suppress ovulation and hormone fluctuations, causing medication-induced, reversible menopause.

[Eventually] it was recommended I get a hysterectomy. I [had] wanted one for a long time, but most doctors I had asked wouldn’t even consider it.

In extreme cases, when women fail all conventional treatments, they may resort to surgery to induce menopause — a bilateral oophorectomy (removal of both ovaries), often with hysterectomy (removal of the uterus). By removing the ovaries, estrogen and progesterone fluctuations end, and thus, so do symptoms of PMDD. Many women start Hormone Replacement Therapy (HRT), which is typically estrogen with or without progesterone. HRT helps reduce or eliminate the impact of menopause, including hot flashes, bone loss, and cardiac risks, among others.

Certain lifestyle changes may help to reduce PMDD symptoms. Examples include regular exercise, practicing good sleep hygiene, and eating a reduced salt, sugar, and caffeine diet high in protein and complex carbohydrates. Practicing self-care such as engaging in therapy and meditation may also be helpful. Specifically, Cognitive Behavior Therapy (CBT) has validated data confirming benefits in reducing PMDD symptoms. Calcium and vitamin B6 supplementation may have benefits, although data is conflicted. Evidence supporting the use of Chasteberry for PMDD is mixed. Chasteberry may cause headaches and nausea, impact the effectiveness of birth control, and affect fertility due to alteration of hormone levels. Chasteberry also interacts with some psychiatric medications.

And therapy — I think PMDD has a root cause for people who have trauma and learning how to control your mind when you feel like that is helpful… My experience of trauma has helped me to talk myself down when I am feeling these feelings.

PMDD is often overlooked, and women fail to receive proper diagnosis and care despite effective treatment options. Their lives are upturned each month, risking interpersonal relationships and minimizing career stability. Physicians must learn more about PMDD so they can appropriately identify and treat women who are suffering. It is also vital that women understand what’s happening each month and advocate for their own treatment. With proper care, women can regain their sense of stability, strength and be empowered to live their lives to the fullest.

It is baffling to me that in 2021 that we are just learning about PMDD, and hopefully, it will be a different world when my daughter gets older.