Get The Facts: Premenstrual Dysphoric Disorder (PMDD)
- Catherine van Warmerdam
- Jan 10, 2019
- 9 min read
In the coming year, 54,007 Canadian and 750,000 American women are likely to attempt suicide as a result of a chronic and invisible illness that is rarely discussed. It's high time we talked about it, don't you think?
I have suffered from Premenstrual Dysphoric Disorder (PMDD) for over ten years. I've tried the treatments, I've joined the support groups, I've read the studies...I am a self-made, silent expert on this topic. Now, it's time to talk.
There isn't a whole lot of awareness about this illness, which is surprising given that 3-8% of menstruating women experience symptoms of PMDD. According to the Calgary Journal, there are approximately 360,053 Canadian women currently suffering from this illness. In the US, there are approximately 5 million women suffering from PMDD.
Some researchers believe the number of PMDD sufferers may even be even higher, at a rate of 5-10% , or 1 in 20 menstruating women.
(Please note that these calculations do not include those that don't identify as female but menstruate nonetheless, and also deserve our compassion and consideration!)
Premenstrual Syndrome (PMS) vs Premenstural Dysphoric Disorder (PMDD)
You might be wondering about the difference between PMS and PMDD. From a medical point of view, PMS is described by a collection of symptoms including emotional and physical discomfort in the days leading up to menstruation. It is thought that up to 75% of menstruating women experience PMS symptoms, which include bloating, breast tenderness, cramping, irritability and weepiness.
The difference between PMS and PMDD is that PMS does not drastically interfere with a woman's quality of life, interpersonal relationships, or ability to attend work or school, whereas PMDD is a chronic condition that can become debilitating in all of these areas. Researchers say that a PMDD diagnosis is used to indicate serious premenstrual distress with associated deterioration in functioning.
Many women with PMDD refer to it as "PMS on steroids", although the cultural narrative surrounding PMS causes this comparison to be quite damaging. PMS has long been used as a way to dismiss women's 'negative' emotions and suffering. There are many people, doctors and researchers included, who don't believe in PMS at all. The predominant cultural narrative surrounding menstruation and PMS therefore does a huge disservice to those with PMDD, as their (very legitimate) health concerns are often left invalidated and untreated.
Treatment for PMS is also different than treatment for PMDD. PMS can be easily treated with lifestyle changes, including diet and exercise. Treatment of PMDD is much more difficult, and includes a combination of lifestyle changes, prescription medication, and psychotherapy. What works for one woman doesn't seem to work for all. Some find treatment success with medications, some with alternative therapies, and some don’t find it at all. There are many, many, women who, having exhausted all options, have even resorted to hysterectomy/oophorectomy (surgical menopause) for relief.
PMDD Symptoms
According to the International Association for Premenstrual Disorders (IAPMD), symptoms of PMDD include:
Feelings of sadness or despair or even thoughts of suicide
Feelings of tension or anxiety
Panic attacks, mood swings, or frequent crying
Lasting irritability or anger that affects other people
Lack of interest in daily activities and relationships
Trouble thinking or focusing
Tiredness or low-energy
Food cravings or binge eating
Trouble sleeping
Feeling out of control
Physical symptoms, such as bloating, breast tenderness, headaches, and joint or muscle pain
These symptoms occur during a week or two before menstruation and go away within a few days after bleeding begins. A diagnosis of PMDD requires the presence of at least five of these symptoms (excerpt from IAPMD).
It's also important to note that although women with underlying mental issues such as anxiety and depression may experience some relief after menses, their symptoms do not resolve completely. This is known as Premenstrual Exacerbation (PME).
Quality of Life & Risk of Suicidality
As you can imagine, this isn't an easy illness to live with; half of the month is often spent battling symptoms, while the other half of the month is spent recovering and picking up the pieces, only to go through it again, and again, and again...It is estimated that a woman with PMDD will experience 3000 days of severe symptoms in her lifetime. That's eight whole years.
Many women experience distress in home, social, and occupational environments, sometimes leading to estrangement, divorce, custody battles, job loss, and financial insecurity.
PMDD is also likely to be comorbid with other mental disorders including anxiety, depression, bipolar disorder, and post traumatic stress disorder. A past history including trauma has been associated with PMDD, with about 60% of sufferers reporting a history of abuse.
This prolonged and ongoing turmoil can take a grave toll on overall mental health. According to IAPMD, 15% of PMDD sufferers will attempt suicide. This means that in Canada, 54,007 women are likely to experience a suicide attempt, while south of the border, 750,000 American women are also at risk.
To me, this is a public health crisis. While society is busy debating whether or not women’s pain and emotions are even valid, there are women suffering to the point of self-annihilation. We must demand better research and treatment for women with PMDD, and call out sexism in society and medicine.
Treatment
PMDD was added to the Diagnostic and Statistical Manual of Mental Disorders (DSM-V) in 2013, yet many researchers and doctors know very little about this illness. Up to 90% of women with this illness go undiagnosed, although studies show that they use general and mental health services more frequently than other women. Women over 30 are most likely to seek treatment for PMDD, although they may have suffered quietly for some time.
The primary treatment for PMDD is an antidepressant; Prozac, Zoloft, Cipralex, etc. Researchers believe that changes in hormone levels in the brain influence serotonin, a neurotransmitter that affects mood. These types of medications, called serotonin reuptake inhibitors (SSRIs) prevent serotonin from being recycled in the brain, causing the body to produce more of it. However, we still don’t know exactly how sex hormones influence serotonin, and we aren’t even sure exactly how antidepressants work.
SSRIs have been shown to be more effective than placebo in 60% of patients with PMDD. This doesn't mean that 60% of women with PMDD experience remission with medication; it just means that the treatment outperformed the control in 60% of cases. It also means that SSRIs don't work in 40% of PMDD cases. Some doctors deem this rate "far from satisfactory".
One study goes as far to say that SSRIs "are almost unanimously considered be very efficacious and the first line of pharmacologic treatment for [PMDD & PMS]. There is a need to examine if this is actually the case."
The side effects of antidepressants are something that is rarely discussed, and can sometimes outweigh the benefits. Side effects of common SSRIs include anxiety, dizziness, insomnia, sedation, nausea and headache. Long-term use can lead to sexual dysfunction and weight gain. Another issue is that a woman must undertake a treatment for at least 3 consecutive menstrual cycles in order to determine efficacy, meaning she has to grin and bear the side effects for three months until she can revisit the treatment with her doctor.
When PMDD was considered to be caused by an imbalance of hormones, the first line treatment was oral contraceptives, however, it remains unclear if this treatment is sufficient.
Doctors generally prescribe a combination of SSRIs and oral contraceptives, however, in the majority of studies, the percentage of women who respond to these treatments is less than the percentage of women who do not respond at all.
In this context, it's not surprising that many of the women who do not get relief from these treatments may resort to surgical intervention. PMDD symptoms tend to alleviate once the ovaries are suppressed. This can be achieved in the short term by using injections of Gonadotropin-Releasing Hormone Analogs (GnRH analogs or GnRH agonists), such a Lupron and Zoladex. Many doctors will use a short trial of GnRH to mimic surgical menopause to test their theory.
However, there is a long list of side effects due to the lack of estrogen production, including hot flashes, vaginal dryness, irregular vaginal bleeding, mood changes, fatigue, and loss of bone density (osteoporosis). The same risk accompanies surgical menopause, and most women will need to undergo some sort of hormone replacement therapy post-surgery to minimize these risks.
In terms of surgery, hysterectomy (removal of the uterus) is usually insufficient in providing relief from symptoms - an oophorectomy (removal of the ovaries) is necessary to achieve the full benefit. The full procedure is known as total abdominal hysterectomy/bilateral salpingo-oophorectomy (TAH/BSO) . A study of 47 women who underwent this surgery shows that 93.6% of women experienced total relief of residual symptoms, while 96% reported that they were satisfied with the results.
IAPMD provides a list of treatment options for PMDD that runs the gamut from pharmacological treatments to natural supplements, including those discussed above.
Potential Causes
A study published in Molecular Psychiatry has shown that PMDD is linked to dysregulation of a specific gene complex. This gene complex, called ESC/E(Z), transcribes genes into proteins in response to sex hormones like estrogen and progesterone, and stress hormones such as adrenaline and cortisol. The study compared white blood cells of women with PMDD and women who did not have PMDD. Researchers found that the gene was over-expressed in more than half of the cells of women with PMDD.
It was previously thought that PMDD occurred as a result of an imbalance in hormone levels; now we know that women with PMDD do not have an imbalance of hormones, but a biological predisposition to be highly sensitive to the changes in those hormones.
“This is a big moment for women’s health, because it establishes that women with PMDD have an intrinsic difference in their molecular apparatus for response to sex hormones – not just emotional behaviors they should be able to voluntarily control,” said Dr. David Goldman, a researcher on the study. (Italics added for emphasis).
The study also mentions that Premenstrual Syndrome (PMS) is 56% heritable. While we don't yet have statistics on the genetic heritability of PMDD, given the information in this study, it certainly seems likely that PMDD could be passed on genetically. However, as we learn more about epigenetics, it is also possible that stressors in the environment could affect the gene complex associated with PMDD. Some women exhibit PMDD symptoms at the onset of puberty, while some seem to develop PMDD after having children. Why? We don't yet know. Studies are sorely needed on the subject of PMDD to answer these questions.
PMDD & Childbearing
What many people don't consider is the impact of this illness on the trajectory of a woman's life. PMDD poses a conundrum for treatment-resistant women who want to have children;
Risk mental health to have biological children, or risk physical health by undergoing surgical menopause
While symptoms of PMDD tend to decrease or disappear altogether during pregnancy, these women are still at risk of developing Post Partum Depression (PPD). Due to the genetic sensitivity to changes in hormone levels, the drastic drop in hormones post-birth can pose a risk for developing PPD. In the postpartum period, and after breastfeeding, PMDD symptoms are likely to return. Parenting with PMDD poses its own challenges. Many mothers living with PMDD report high levels of guilt and shame surrounding their inability to control their emotions around their children, including lack of patience, irritability, and emotional outbursts. The unknowns regarding the genetic heritability of PMDD also poses risks for passing the disorder on to offspring.
Women who choose to undergo hysterectomy/oophorectomy (TAH/BSO) may experience relief from symptoms, but take on the risks of surgical complications, issues with hormone replacement therapy, and the possibility of developing osteoporosis due to entering early menopause. Of course, once the uterus and/or ovaries are removed, the woman is unable to conceive, carry a child, or give birth, making this decision rather extreme to those who haven’t yet had children or haven't decided on having children.
I currently live in this continuing cycle of upset and confusion, along with thousands of women all over the globe. Many of us feel as if we are defective in some way; never feeling as if we are enough, struggling to keep our relationships and careers together, all the while caught in the middle of a war between our brains and our bodies.
Personally, I long to have both a career and children, yet I find myself unable to. I am loathe to make rash decisions regarding surgery, but as I have explained, the stakes are high.
There has to be a better way.
If you feel so inclined, you may donate to the International Association for Premenstrual Disorders.
You can also help others by sharing this article.
Here are some great resources for PMDD:
Websites:
Facebook Support Groups:
IAPMD PMDD & PME Support
PMDD & Mental Health Support Group
Positive Living With PMDD
PMDD, Hysterectomy, & Life After
PMDD Moms
Teen PMDD
PMDD Partner Support
Instagram:
@pmdd.memes
@iapmdglobal
@pmdd.survivor
@mevpmdd
@viciouscyclepmdd
Thanks for taking the time to learn about PMDD, the more awareness of this illness, the closer we are to finding better treatment. Are you a sufferer? Let me know what works for you in the comments or on social media.
Catherine
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