A few weeks ago, I was chatting with Lindsey (our resident food pro), and she mentioned she was dealing with PMDD. She also mentioned it’s way more common than you might think — it’s estimated that over five million women in the U.S. are dealing with it right now.
I wanted to learn more, so I asked Lindsey to share her experience, and everything she’s learned about PMDD so far. It’s a super informative post and I’m so grateful to Lindsey for taking the time to write this up. Here’s Lindsey:
One day awhile back, I was exasperated with everything, but especially my mental and physical health issues. I searched online for something akin to “symptoms that get better when period starts.” Pre-Menstrual Dysphoric Disorder, or PMDD, was the top result, and that search changed my life and definitely saved it too.
PMDD is a fairly common disorder — chances are you or someone you know has PMDD and may or may not even know it. I certainly didn’t. I’m sure I had seen references to PMDD at one point or another, but it never stared me squarely in the face like it did that day.
By the way, in this post I’m using the terms “woman/women/female,” but what I really mean is those who were assigned female at birth (AFAB) because it’s not just cis women that suffer from PMDD.
The 11 PMDD Symptoms
Most women with PMDD diagnose themselves, as I did. The official diagnosis by a medical professional is made by assessing documented symptoms and their severity over the course at least 5-6 menstrual cycles, while the individual with PMDD tracks their cycle with as much detail as possible.
There are 11 PMDD symptoms, but experiencing 5 or more constitutes a PMDD diagnosis. The symptoms may or may not be a surprise:
- Depression, sadness, despair, and/or suicidal ideation
- Anger or irritability directed at others
- Trouble concentrating or mental fog
- Lack of interest in daily activities and relationships
- Mood swings, panic attacks, and/or frequent crying
- Increased or decreased appetite, binge eating, food cravings
- Trouble sleeping, insomnia, excessive tiredness, or the need for more sleep
- Feeling overwhelmed or out of control
- Other physical symptoms such as bloating, digestive troubles, breast tenderness, headaches, joint and muscle aches, skin rashes, acne, and fatigue
- Symptoms disrupt the ability to function in family, social, work, and/or other situations
- Symptoms aren’t related to or exacerbated by another medical condition
Those who suffer from PMS will recognize a lot of the symptoms on the list. But PMDD symptoms are more severe with extremely severe mood symptoms. The real distinguishing factor are the last two items on the list: the symptoms aren’t related to another medical condition and disturb the ability to function.
My PMDD Story – Part 1
Looking back over my life, I think I probably started having PMDD episodes as early as my first menstrual period when I was in 6th grade. My battle with depression and anxiety went unnoticed by those around me because I kept everything bottled up inside and blamed myself for all that was wrong in my world. If only I had known then what I know now.
For the last decade or so, I finally made a connection between my mental and physical symptoms and my menstrual cycle. It was hard to track or identify causes because it seemed like I was constantly pregnant, postpartum, or breastfeeding during the years previous.
The first symptoms I noticed were insomnia and drenching night sweats that would subside as soon as my period started. I began to look forward to my period starting because I knew I’d be able to sleep again until the week or so before the next one started.
I didn’t realize at the time that my moods were also inextricably linked to my hormone levels. And once I found the list of PMDD symptoms, it became clear that so many things I was experiencing were caused by my menstrual cycle. I have had some or all of the PMDD symptoms on that list above, sometimes all at once.
I went from doctor to doctor trying to piece together what was wrong with me. I was dismissed every time because my blood work always came back perfect. The only “health issue” I had was my body size. I was tired of being made to feel like a hypochondriac.
April is PMDD Awareness Month both in the U.S. and the UK, where the event first originated and was organized by The International Association For Premenstrual Disorders (IAPMD), formerly the National Association for Premenstrual Dysphoric Disorder (NAPMDD) which was founded in 2013.
Since diagnosing myself with PMDD, as is common with a lot of sufferers, I’ve made it a personal mission to tell other women about PMDD in an effort to educate and help anyone who may be suffering.
What is PMDD?
PMDD is a cyclical, hormone-based mood disorder that affects an estimated 2-10% of women, but the number may be even higher due to undiagnosed or misdiagnosed cases, or those AFAB individuals who have taken steps to prevent ovulation.
PMDD is often misdiagnosed as bipolar disorder due to the cycling of manic or depressive states over time. The PMDD episodes happen on a monthly basis, where as a bipolar diagnosis only requires the occurrence of four episodes in 12 months.
PMDD can be incapacitating and cause the loss of work, money, relationships, health, and affect all other areas of life. Some crossover in symptoms occurs between PMDD and other hormone- or reproduction-related conditions (such as endometriosis or fibroids) or events (pregnancy, birth, or miscarriage). Those with PMDD are much more likely to suffer from PPD (postpartum depression) and have a greater risk of suicide.
There is also something called PME, which stands for Pre-Menstrual Exacerbation. This means that there is already another medical condition, but it worsens with the onset of ovulation and other symptoms may appear too. Someone can have PMDD and PME, but it’s also possible to just have PMDD or PME. That will make more sense once we get to treatment options. PME doesn’t subside with PMDD treatments.
What Causes PMDD?
It is believed that PMDD is caused by a genetic condition which results in a sensitivity to the natural rise and fall of the female sex hormones during the monthly cycle. Symptoms also tend to increase or worsen following hormone-related events like ovulation, pregnancy, miscarriage, birth, and menopause. It is very common for PMDD to worsen as a woman gets closer to menopause.
For reference, the two main phases of the menstrual cycle are the follicular phase and the luteal phase. The follicular phase begins on the first day of menstruation and continues until ovulation, usually Day 14. The luteal phase lasts from ovulation to the start of the next menstrual period.
Estrogen and progesterone levels decrease and increase at different points during the monthly cycle. Estrogen is at its lowest level at the start of the menstrual period and slowly rises until ovulation occurs, and the levels drastically fall.
With the onset of ovulation, progesterone levels rise and peak during the week before menstruation begins. Other hormones (FSH and LH) levels peak shortly before and drop again immediately following ovulation.
Follicular Stimulating Hormone (FSH) stimulates an ovarian follicle causing an egg to grow and mature. When estrogen levels peak, it signals the pituitary gland to cease producing FSH (and levels drop to their lowest) and start making more Luteinizing Hormone (LH). The LH level peaks around Day 13 and is responsible for the release of the mature egg from the ovary, or ovulation.
PMDD symptoms appear around the time of ovulation and significantly worsen until menstruation begins. Symptoms abate for a week or so, only to resurface and the vicious cycle continues.
PMDD Treatment Options
Of all the treatments for PMDD, there is only one that offers a true cure for those with the most severe PMDD symptoms. Other treatments are effective at treating physical and mood symptoms, and confirming a positive PMDD diagnosis. Symptoms may not permanently disappear until a woman enters menopause – naturally, surgically, or chemically.
Currently the first defense is prescription anti-anxiety and/or antidepressant medications. The pills may be taken daily or just the two weeks following ovulation until menstruation begins. There may be some relief of symptoms depending on the severity of PMDD, but for most sufferers, these medications aren’t totally effective or may just take the edge off. It can take awhile to sort out which medication and which dosage works best. But it’s a good place to start and can be effective for some.
Lifestyle changes are a common recommendation. Eating a certain type of diet (usually the Mediterranean diet), exercising daily, doing yoga, using cognitive behavioral therapy, and practicing mindfulness and meditation may be effective for some individuals. It certainly doesn’t make symptoms worse. There are also natural routes, which I am not as familiar with. Vitamins and supplements may help too, but it’s important to discuss these options with a healthcare provider as they may interact with prescription medications.
From personal experience, I can say it is very difficult to stay on top of self-care and good lifestyle habits during the “hell weeks,” as I call them. Because my PMDD was severe, I had a hard time staying consistent, but can say that exercise and eating plenty of fresh fruits and vegetables does help.
Due to the sensitivity in the rising and falling levels of hormones, another treatment option is regulation of the female hormones levels through use of hormonal contraceptives. Certain types of IUDs may help with the release of localized progesterone. Other hormonal treatment options include the Pill, implants, rings, etc., etc. Sometimes it helps, but sometimes it can aggravate symptoms depending on the woman and situation.
Preventing ovulation is the only way to completely eliminate PMDD symptoms. While the other treatment options above help many manage, those with the most severe PMDD may make the difficult decision to go with the last resort of having their ovaries removed. More on that below.
Before resorting to surgery, one way to “turn off the ovaries” is through the use of continuous low-dose hormonal birth control pills in which the placebo pills are skipped and another pack is started immediately following the 21 days of active pills. This stops ovulation and menstruation by “turning off” the ovaries and keeping hormone levels steady. Remember, it’s the rising and falling of the hormones that causes PMDD symptoms.
Ovulation is typically prevented by use of birth control pills, but the week of placebo pills (or inactive week where no pills are taken) causes breakthrough bleeding which is like a period, but is really a withdrawal from the hormone pills. This causes a change in hormone levels and therefore may cause PMDD symptoms. That’s not true for everyone – some women do fine managing PMDD with the pill.
As part of diagnosing PMDD or as a short-term treatment, some practitioners will prescribe a 6-month course of Gonadotropin-Releasing Hormone Agonist (GnRH-a) which stops ovulation. GnRH is a hormone made in the hypothalamus that reaches the pituitary gland through the bloodstream and signals it to start producing LH and FSH. GnRH-a prevents that from happening. This is chemical menopause.
GnRH-a is also known by the prescription drugs names: Zoladex (generic: goserelin), Lupron (leuprolide), and Synarel (nafarelin).
The side effects to GnRH-a are severe and it cannot be used long-term, and tends to worsen the PMDD symptoms during the first few months of use. It may also be prohibitively expensive and not covered by insurance.
The onset of menopause (either surgically, chemically, or naturally) brings relief from PMDD. Until natural menopause occurs, the most effective and only way to completely cure PMDD is to remove the ovaries all together, and preferably the uterus, fallopian tubes, and cervix. This is called surgical menopause. This is considered a last resort option when all other treatments have failed.
In my case, I wasn’t able to continue with continuous birth control because I developed blood clots as a side effect. Surgery was my only remaining option and I didn’t make that decision lightly. Nor do I recommend that anyone consider surgery unless there is no alternative.
Of course, I have to mention that a hysterectomy, even as a last resort, is not a ready option for many women or AFAB individuals with PMDD. Insurance companies may not see it as medically necessary. Some women may be denied surgery due to a doctor’s refusal because they still have “many childbearing years ahead” of them despite begging for relief from the debilitating symptoms. (This is a real thing!) Or it may not be an affordable option even if the option is there.
Also, there are plenty of women who would still like to bear children, if possible, and aren’t ready to part with their reproductive organs. The only option is to keep dealing with the beast that is PMDD until they feel their families are complete or they reach menopause naturally.
If on average there are 16.5 million women or AFAB individuals residing in the U.S. who are of reproductive age, there could be as many as 5+ million women who live with PMDD.
Early menopause also doesn’t come without risks. Women under the age of 55 have to be on hormone replacement therapy (HRT) to prevent heart disease, osteoporosis, and protect the brain against dementia or other cognitive deficiencies until they reach the age when they would naturally enter menopause. In other words, early menopause with or without HRT may shorten a woman’s life or cause other health issues to arise.
My PMDD Story – Part 2
A year ago I decided it was time for me to get my life back. I went to see a new-to-me physician’s assistant at a local women’s clinic where I live. It was the second time in my life I was completely honest with a practitioner about my persistent suicidal ideation, depression, and anxiety. It was one of the only times someone took the time to listen to my symptoms and believe me. (The other was a midwife I saw who helped me navigate my previously undiagnosed severe Postpartum Depression.)
I followed all of the treatment options I listed above, except for taking GnRH-a. Nothing worked for me. Even taking a laundry list of prescribed medication didn’t “cure” me, it only muted the most severe depression. I was still thinking about suicide constantly.
Once I started on continuous birth control to stop ovulation and regulate my hormone levels, and my symptoms vanished, I knew I was right: it really was PMDD.
There’s a part of me that is angry that I went undiagnosed for so long – it’s really a simple diagnosis. But I know that it was probably more due to the way mental illness is seen and treated. That stigma. Or maybe I was dismissed because I was just another tired, cranky mom who had too much on her plate and just needed a vacation. (I did have one doctor a few years back basically say that to me.)
Every diagnosis I’ve received in the past decade can be attributed to my sensitivity to rising and falling hormone levels – including my history of eating disorders.
In a few days I will be going in for a total hysterectomy with bilateral salpingo-oophorectomy. I will enter menopause and (hopefully) be free of PMDD for the first time since my first period started 27 years ago. I’ll be forever grateful for my PA who listened to me, advocated for me, and believed me.
I have hopes of going back to school to become a mental health professional who can help raise awareness, and diagnose and treat women with PMDD and other mood disorders.
More Studies Need To Be Done
Awareness is one way to really push PMDD from obscurity and remove the stigma from mental illness or mood disorders that women and AFAB individuals experience. We can do this by talking about our experiences and help getting the word out. It’s not shameful to have a mental illness or mood disorder.
PMDD hasn’t been studied extensively yet. It’s only just recently been added to The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5).
There have been some studies about PMS and PMDD that conclude these disorders are culturally based and a social construct, and therefore not “real.” One particularly condescending article (written by a man, of course) received attention because the author kind of said it’s an excuse for us women to behave badly every month.
The subtext of these critiques is that PMS is “socially constructed,” meaning it’s an imaginary condition foisted on women by society, which is another way of saying PMS is “not real.” (source)
A better article, in my opinion, is the rebuttal by two women on Vox.com — Of Course PMS is Real.”
What Can You Do To Help or Get Help?
If you think you may be experiencing PMDD, start tracking your cycle and symptoms closely. I love the Me v PMS app. It is great for not only tracking symptoms and severity, but also to log which treatments are used and when. It’s a good idea to track your cycle anyway.
It can be hard for those with an IUD or those who use a contraceptive that eliminates an actual menstrual period. Ovulation can still occur without bleeding and the symptoms can also be there — that happened to me!
Start by talking to your OB/GYN at your yearly checkup. Or if it’s been awhile since you’ve even had a checkup, make an appointment! (There are lots of free and sliding scale clinics if affordability is an issue.) OB/GYN providers can also direct patients to therapists and counselors who specialize in women’s mood disorders.
My amazing team consists of my psychiatrist (medication management), my PA and surgeon at the women’s health clinic, my primary care doctor, my registered dietician (who is anti-diet and specializes in eating disorders), and a LCSW (Licensed Clinical Social Worker).
PMDD can also run in families. It’s been interesting to look at the women in my family, including my daughters, through a PMDD lens. I’m positive I’m not the only one with PMDD. My girls may have a long road ahead of them, but I’m equipped to help them cope.
If you see something worrisome, come from a place of love and share your concern with that person. It may change everything.
Advocate for yourself. Educate yourself. Keep going until you find someone who will listen and take you seriously. Visit sites like IAPMD.com. Help spread the word on social media.
- John Hopkins Medicine
- IAPMD Self Screening Test for PMDD or PME
- IAPMD PMDD Provider Directory (not complete, but a start, also accepting submissions)
Please note – I share this for informational purposes only. This is not a substitute for proper medical advice or treatment. Please see your healthcare provider to discuss this or any other medical condition.
Edit 5/9/19: I had a total vaginal hysterectomy with bilateral salpingo-oophorectomy two weeks ago. I noticed an immediate relief of certain symptoms quickly following my surgery, especially regarding my depression and anxiety.
While I know this isn’t the right choice for every woman, ultimately I am happy with my decision. It is quite an experience to awaken from anesthesia and have the permanence of the surgery set in. I had to let myself mourn for a few days – I will never bear a child again. Even though I wasn’t planning to, the option is permanently gone. It made me very sad.
I will be on hormone replacement therapy for the next 15 years. That’s something I wish I had learned more about pre-surgery. I’m sure the outcome would have been the same, but I’m someone who tries to absorb as much info as possible, and I just didn’t even know what I was getting myself into. Ha! So far, so good. I’m glad I have an excellent surgeon to help me navigate this part of recovery.
Thank you, Lindsey.
Oh my goodness I learned a ton! I had heard of PMDD (of course), but had no idea the only current reliable cure is menopause. It’s a reminder to me of how much we need to advocate for women’s health issues to be studied and researched.
Do you remember the article about Viagra? At the same time it was discovered that it helped with erectile dysfunction, researchers realized it was an effective pain relief for serious period pain. But the male review panel refused further funding noting that “cramps are not a public health priority.” (Makes me scream!)
All that to say, we know women’s health has been historically ignored, and we have a lot of catching up to do.
What’s your experience with or knowledge of PMDD? Is Lindsey’s story familiar to you? Are you already a PMDD expert? Or was a lot of this new info for you? If you got to choose a female health issue to fund research on, what would you choose first?