PMDD was ruining my life: A tell-all
The little-known chronic reproductive illness all menstruating people should know about
In 2022 I spread twelve pages of homemade charts on the floor of my OB’s exam room. For three months I’d tracked daily changes twelve categories of my wellbeing, including depression, anxiety, hopelessness. The pattern of X’s on my charts formed a pattern clear to me. But was it clear to him?
“What do you think?” I asked.
He paused, then replied: “No good scientist says anything is 100%, but I think there’s a 99% chance that you have PMDD.”
“I only have two good weeks a month.”
It felt like someone had read my mind when I read that line in the diagnostic material for premenstrual dysphoric disorder. PMDD felt like it stole half of every month from me, like I lost myself for two weeks at a time and descended into a hole of depression, anxiety, and, at my worst, suicidality.
I’m writing this post because I know there are other people out there white-knuckling it through some of the worst months of their lives not knowing that their pain is caused by a mental illness they may never have heard of. I learned about PMDD on TikTok, of all places, and if I hadn’t seen Lindsey Gurk’s posts about PMDD, I wouldn’t be where I am today (or maybe here at all).
I’m sharing all I’ve learned in the hopes that it reaches the right people.
What is PMDD?
Premenstrual dysphoric disorder is a severe, chronic mood disorder that causes psychological, emotional, and physical problems during the luteal phase of your menstrual cycle. The exact cause is still somewhat of a mystery, but there’s evidence to suggest that hormone changes during the menstrual cycle cause the brain to stop producing serotonin, a hormone that regulates mood and memory.
There’s evidence to suggest that hormone changes during the menstrual cycle cause the brain to stop producing serotonin, a hormone that regulates mood and memory.
Why does PMDD happen?
PMDD is an abnormal reaction to changes in levels of progesterone and other sex hormones naturally produced by your body.
What triggers PMDD?
Lots of PMDD patients report that their PMDD arose after their first or second pregnancy. But, on a monthly basis, PMDD — like PMS — is triggered by a drop in your sex hormones between ovulation and menstruation. Here’s a little refresher on the menstrual cycle ↓
Four phases of the menstrual cycle:
📈 Follicular
Your brain tells your ovaries to start producing egg follicles.
🥚 Ovulation
One of your ovaries releases a mature egg.
📉 Luteal
The new egg releases estrogen and progesterone, which thickens the lining of your uterus to support a pregnancy. 🚨 This is when PMDD and PMS symptoms start to occur.
🩸 Menstruation
If your egg is not fertilized (you’re not pregnant), the lining of your uterus sheds.
Until 2000, PMDD was called “late luteal phase dysphoric disorder.” It was recognized as a mental illness in 2013 and added to the International Classification of Diseases the year I was diagnosed, 2022.
By the time I was diagnosed with PMDD I had already had a hysterectomy, so I was very confused about where I was in my “cycle.” Because I had one ovary left and, in theory, ovulated every month, I knew my hormone levels were changing, but I never knew when it was going to happen.
PMDD and PMS
Many people who menstruate also experience PMS, premenstrual syndrome, which may look like:
moodiness
food cravings
fatigue
cramps
People with PMDD may also experience these symptoms, but PMDD is characterized by severe challenges to emotional and psychological wellbeing that interfere with your life, school, work, and relationships.
PMS is often dismissed as an “excuse,” and even today some researchers refuse to believe that it’s a real thing. This has probably added to the taboo around reproductive disorders like PMDD.
→ 7 f*cked-up facts about women’s health I just can’t get over
PMDD and ADHD
Research suggests there is a link between PMDD and ADHD — attention deficit hyperactivity disorder — in that ADHD symptoms worsen with the onset of PMDD the week before your period.
What does a PMDD episode look like?
A PMDD “episode” is when you experience severe onset of symptoms 1-2 weeks before your period. Typically, the symptoms start to resolve 2-3 days after your period begins.
Classic symptoms of PMDD
Extreme mood swings, such as irritability, anger, hopelessness, or sadness
Difficulty concentrating and a lack of interest in your usual activities
Breast tenderness or swelling
Muscle and joint pain
Headaches
Bloating
Changes in appetite, such as overeating or food cravings
Sleep problems
A sense of being overwhelmed or out of control
Thoughts of suicide
Paranoia
Emotional and rejection sensitivity
Pronounced self-criticism
Poor memory and forgetfulness
Fatigue and lethargy
PMDD can be mistaken for:
Because of the variety of symptoms, PMDD is often mistaken for depression or bipolar disorder. In fact, a (mis)diagnosis of bipolar disorder is a risk factor for PMDD. Anxiety and depression symptoms also overlap with PMDD.
Treating PMDD
PMDD is not a straightforward illness because the symptoms are emotional, physical, and psychological, and there isn’t a lab test you can do to confirm the diagnosis.
Diagnosing PMDD
Some sources say that a healthcare provider or therapist can diagnose you with PMDD if you display five or more of the symptoms, at least one of them being mood-related. Your lifestyle and medical history also play a role in diagnosis, but, by far, the most helpful tool is a Daily Record of Severity of Symptoms, or the “chart.”
A daily record of symptoms allows you to rate the severity of all 11 classic PMDD symptom categories. If and when the severity matches up with your luteal phase for several months, you can make a case for PMDD treatment.
Tracking PMDD symptoms
I made my own version of the Daily Record of Severity of Symptoms and kept it on a clipboard at my bedside. Every night before bed I filled it out. My doctor told me I needed at least three months to establish whether there was a pattern.
Tracking symptoms long enough to see a predictable rise and fall gave me a feeling of control, because I could prepare for more anxiety, panic, and paranoia, and try to be more kind to and less critical of myself. It also helped to communicate where I was in the “roller coaster” to my husband, and, if possible, to line up a little extra child care on the days when I was feeling particularly bad.
How do you treat PMDD?
I cannot overestimate how much my medical privilege helped me in my journey to treat PMDD. My husband is a physician, and he really facilitated the process of my diagnosis, and advocated for me tirelessly along the way. Because of the psychological and emotional symptoms I constantly doubted myself and my reality, and I needed him there to encourage me to keep seeking help.
The first PMDD treatments a provider might suggest are:
Lifestyle changes: More exercise, and less caffeine, sugar, and alcohol
Antidepressants: Starting an antidepressant like an SSRI (selective serotonin uptake inhibitor) can help with the psychological symptoms
Hormonal birth control: Birth control pills with estrogen might help level out the “roller coaster” through your menstrual cycle
I had already done all of these by the time I was diagnosed with PMDD in 2022: I exercised five days a week, maxed out my psych meds and went to therapy, and tried several different methods of hormonal birth control solely for the purpose of “leveling out” my cycle, as I’d already had my uterus and one ovary removed.
So, when he confirmed the diagnosis, I asked my OB to take out my other ovary. I wanted to be done with the ovulation guessing game and feeling at the mercy of my hormones.
He was hesitant to put me into full-blown menopause at the age of 31, which comes with its own risks, but he suggested a drug I was already familiar with from egg donation — Lupron — which would shut down my ovary so I’d stop ovulating. It was a less-permanent way to simulate menopause. And, if my symptoms improved without ovulation, I’d know I was a candidate for surgical menopause.
When he confirmed the [PMDD] diagnosis, I asked my OB to take out my other ovary. I wanted to be done with the ovulation guessing game and feeling at the mercy of my hormones.
Lupron
I started Lupron in January 2023. Lupron is an injection that comes in 1-month and 3-month doses. Even with insurance, they cost between $1,500 and $1,900 a month, which was clearly unsustainable in itself, but (while I cried over the cost of each precious injection) I was desperate for a solution to the mental health crises that left me feeling privately debilitated. I agreed to six months, and started to feel the effects of menopause set in after two months:
fatigue
hot flashes
muscle loss
join and muscle pain
… but, after six months of continuing my symptom chart, I started to see that nearly all my symptoms improved in severity and duration. I’d happily trade muscle loss and pain for mental health crises, so we scheduled the surgery to remove my remaining ovary.
Hysterectomy
In extreme cases, in which PMDD is untreatable by any other method, hysterectomy might be the last good option. And — is it a good option? I don’t know. It’s a personal choice, and, while I believe it saved the quality of my life (if not my life in general), there are a lot of costs and benefits. I was fortunate to have already had a child by the time I had a hysterectomy and, if I had known I had PMDD before I got pregnant, I can only hope that I would have been brave enough to go through pregnancy and postpartum knowing I was sensitive to hormones.
I had a hysterectomy to treat pelvic congestion syndrome, so I was in the unusual circumstance of looking at PMDD from the perspective of someone who only had an ovary left to lose.
But I kept all of it — my uterus, ovary, fallopian tubes from my first surgery — in a jar in my office. And, after my oophorectomy in July 2023, I reunited the whole gang.
What you can do about it
If this post resonates and you think you have PMDD I highly recommend making an appointment with your primary care provider or OB-Gyn and downloading the Daily Record of Severity of Symptoms and start tracking how you feel starting today. The more data you have the better you and your provider can assess your case.
In the meantime here are some other things I found really helpful:
Supportive treatments
Acupuncture: I tried acupuncture for the first time in 2023 because it came highly recommended in the PMDD literature. It specifically helped my muscle and joint pain that came with Lupron and surgical menopause.
Chasteberry (vitex agnus castus): This supplement has been reported to help with PMDD and PMS symptoms. I can’t say whether it made a huge difference, but it definitely didn’t hurt. Make sure you look at all the possible side effects before you think about taking it.
How to explain PMDD to a man
One of the top searches related to PMDD is: “PMDD is ruining my life.” And, in my experience, that is not an exaggeration. It felt like I was a different person for two weeks of every month, like I descended into constant tension, anxiety, and depression, though I didn’t know what’s what was happening at the time. While I could “fake it” well enough to get through most days , I kept wondering what was wrong with me. Why was I having such a hard time just doing life?
I explained it to my husband like I was trying to life my life on ‘expert’ mode, like someone just cranked up the difficulty level on everything so even getting out of bed in the morning took a lot of effort.
One of the hardest parts was the silence around this illness — and other reproductive conditions — because I thought I was the only one, and it made me feel crazy.
That’s part of the reason I named this Substack “Modern Hysteria,” because before we knew there were diagnosable reproductive illnesses, women were labeled “hysterical” and given a lobotomy or sent to an asylum (or, depending on which period of history you’re looking at, called a “witch”).
One of the hardest parts was the silence around this illness — and other reproductive conditions — because I thought I was the only one, and it made me feel crazy.
Caring for a loved one with PMDD
Here are some things you and your loved ones can do to support you through PMDD episodes:
Share this post. If you think you have PMDD, I encourage you to show them this post so they can get some context on this disorder.
Take it seriously. PMDD is a real condition. Dismissing the symptoms can be very isolating.
Plan around your monthly cycle. Once you track your symptoms you can start to predict their onset. Plan to pickup groceries, get takeout, or ask for more childcare during these times.
I didn’t know anyone who had a PMDD diagnosis when I was going through this, and the confusion and isolation probably made it harder. Being able to connect with other people who get it, and have tried various treatments, can be super helpful in coping with PMDD.
That includes me! I’m not a therapist or a medical provider, but I am writing a book about PMDD, infertility, and life after hysterectomy. Please don’t hesitate to connect with me if you have questions or just want to say “hi.”
Get in touch
✉️ Email me at micah@micahlarsen.com
📱 Follow me on Instagram at @micahlarsen_
✍🏻 Leave a comment here on Substack
Women’s Sharing Circles
Free, online Women’s Sharing Circles are another great place to connect over women’s issues like menopause, mental health, marriage, and motherhood.
Our next Sharing Circle is Mon. Sept 16 and the topic is “Starting Over.”
Thank you for sharing this, I’ve just been diagnosed with it this week and happened to come across your post. Mine was triggered by perimenopause and grief. I’m still debating the treatment options for myself but at least I feel less alone in all this.
Thank you so much for this. We have it in the family and it's horrible. But so wonderful to hear a hopeful and informative article on the topic.