What It Feels Like To Live With PMDD — And Finally Find A Solution For It
I don’t know exactly when the lead up to my period went from a minor inconvenience to all-consuming fatigue, paranoia, and despair. It was a slow build-up. But, the best I can tell, something happened the year I turned 30, which was also the year I moved back to the U.S. after more than half a decade of living abroad. At first I thought my worsening menstrual cycles were just my body adjusting to a new city; a new diet; a new schedule. But as my life got better and better, my body seemed to only get worse.
I’ve always had fairly rough PMS — the usual irritability, crying jags, mood swings, and weird food cravings — but for the past couple years, the lead up to my period has been five to 10 days of total hell. My entire body, from ankles to face, would swell. My boobs — which are already huge — would go up a cup size and were so sensitive I could barely get dressed. Nothing fit right. I felt like I was crawling out of my skin. Sometimes I would have my boyfriend lie flat on top of me in order to compress my central nervous system, because it was one of the only things that could make me feel even a little bit physically comfortable.
And that was just what was happening in my body. Emotionally, I was a even more of a wreck. Crying jags? Try uncontrollable sobbing, usually about nothing at all, that repeated for days. I became convinced that my boyfriend was cheating on me — despite the fact that he’s an amazing human who would never do that — and searched for clues in his social media and in papers he left around the house. I made up entire — untrue — narratives about him and about our relationship. I was simultaneously cripplingly lonely and antisocial, sure that no one wanted to be my friend. I isolated myself. I slept too much. I doubted everything. My brain was a constant anxiety loop, picking up a random thread and then winding it around and around and around until it was a tangled knot of conspiracy theories, anxiety, and paranoia.
Working Toward A Diagnosis
But through all of that, I still thought I was suffering from a run-of-the-mill hormone imbalance. I got tested for Polycystic Ovary Syndrome (PCOS). (Nope.) I had my thyroid checked. (Nothing.) I spent hundreds of dollars on supplements after my gynecologist recommended calcium, vitamin B6, 5-HTP, vitamin D, and magnesium. (Zero effect.) I spent thousands of dollars on acupuncture and Chinese herbs — which had some noticeable effect — but I was still suffering. And when my insurance refused my claims for reimbursement, I had to stop doing even that.
That’s when things went from pretty bad, but kind of manageable, to unbearable. With the one thing that was starting to help financially out of reach, I focused more on symptom management than on fixing the problem. I drank too much wine. I smoked too much medical marijuana. I took a million supplements. I ate too much junk food.
The month that I found myself unable to leave the couch and get to work again, something shifted in me. For the first time, I viscerally understood why someone would choose to end their life. I wasn’t suicidal — but I was close. I couldn’t keep living the way I’d been living. But I also didn’t think there was a solution.
So I did a very millennial thing: I posted an Instagram Story about it. I was hurting and I was lost and sometimes when I’m feeling those things, connecting with and helping other women helps me feel better. I made a series of images describing what I was going through every month, the things I’d been doing to try to help it, and ended with a callout to other women who were suffering. And amidst the flood of heart emojis and other messages from women with their own menstrual problems, one message stood out. It was from a stranger and it said simply “Read up about PMDD.”
I’d heard of premenstrual dysphoric disorder (PMDD) before. I’m a sex educator and women’s health advocate, so I’m more informed than the average person about sex hormones. But in all of my research and all of my doctor’s visits as I tried to fix whatever was wrong with me, I hadn’t looked at PMDD through the filter of my own experience. So I followed that stranger’s advice and I googled PMDD.
One of the first articles I clicked on was from the Harvard Health blog, titled “Treating premenstrual dysphoric disorder.” The article said that, for five to eight percent of women, the natural hormonal shifts that come with the menstrual cycle are devastating. The one to two weeks before menstruation are so disruptive that they affect our relationships, prevent us from going to work, and — in 15 percent of cases — lead to suicide. As with PMS, all of the symptoms disappear as soon as a woman’s period starts.
It’s scary stuff, but as I read the list of symptoms for PMDD, I felt some hope for the first time in months. I was checking off every single symptom. And not only did the article show me that what I was dealing was more than PMS, it also offered a solution.
SSRIs For PMDD
According to the Harvard article, selective serotonin reuptake inhibitors (SSRIs, also known as antidepressants) are effective for between 60 and 90 percent of people with PMDD. While people with anxiety or depression usually have to wait four to eight weeks to see the full effects of medication, people with PMDD usually see results immediately. As in, the very first cycle they take it. And because it’s so effective, most people with PMDD only have to take it for two weeks per month, after ovulation, stopping when their periods starts.
Because science isn’t totally clear on the cause (or causes) of PMDD — it might be a drop in estrogen leading to less serotonin production; or maybe it’s genetic; or maybe it’s the steep rise in progesterone at the end of our cycles; or maybe it’s exposure to prolonged stress; or maybe it’s some combination of those factors — they’re not totally sure why SSRIs are so effective. But all I could think as I read that article was finally. Here was a solution! A possible real, honest-to-God solution to a problem I was pretty sure was never going to be solved.
"Serotonin imbalance can result in significant depressed mood. So, yes, for some woman PMDD is a serotonin disorder and treating with SSRI's can have excellent results," PMDD expert Andrea Chisholm, MD, tells Bustle. "For other women — especially those who experience more of an agitated anxiety in their luteal phase — the significant increase in progesterone may be more responsible for their symptoms and SSRI may not be as effective."
For women who don't respond to SSRIs, Dr. Chisholm says, the best approach is to suppress their cycles altogether. That can be done in most people with hormonal birth control — like the Pill or the Patch — or, in extreme cases, with hysterectomy. For those women, PMDD appears to be more hormonally-based, rather than serotonin-based.
So I went to my doctor and I outlined what I’d been going through. I told him about the lifestyle changes I’d already made — in addition to the supplements and acupuncture, I’d also started exercising more, changed my diet, and started drinking less — and I outlined my family’s extensive history with mood disorders, including major depressive disorder, bipolar disorder, and suicide. I told him about the Harvard article I'd read and that I was pretty sure I had PMDD. Based on all of that information, he agreed with me. He told me that he usually recommends lifestyle changes as the first-line treatment for PMDD but, since I’d already made them, he was going to write me a prescription for fluoxetine, which is sold under the brand name Prozac.
I was so nervous when I started the pills. What if they didn’t work? What if they did work, but the side effects were too intense to make it worth it? I knew from my own research that SSRIs can cause anything from sexual dysfunction to sleep disruption to suicidal thoughts — all of which were terrifying. I wanted so badly for someone to be able to tell me: What’s it like to literally change your brain chemistry? But, of course, no one could.
And for the first four or five days of medication, I was loopy AF. The very first medicated day, I couldn’t get off my couch. But it wasn’t like PMDD can’t get off the couch, where I was overcome by despair and wanted to crawl out of my skin. I just felt very, very chill and then really nauseous when I stood up. So I called out of work and I watched TV all day. I ended up missing about three days of work, but the loopiness got a little better each day.
After those initial rough days, the first two weeks on Prozac were like someone had turned the contrast on the world up to 11. Everything was brighter; everything tasted better; and I felt fantastic. The anxiety loops were gone. The paranoia was gone. I felt energized, social, bold. It’s such a cliche, but I’m going to say it anyway because it feels incredibly profound: I felt like myself again, maybe for the first time in years. It made me realize that something had been wrong with me for a longer than I’d thought.
Then my period surprised me. It came five days early, which meant my cycle was 28 days instead of 34 to 38, for the first time in over two years. That was a nice surprise, and one not even my doctor could explain. And, even more amazing, I had zero negative days leading up to it. Sure, I got a tiny bit weepy the day before. And I had a little bit of breast tenderness. But those are normal PMS symptoms. I was so happy that I started crying on the toilet, the red stain in my underpants blurring through my tears. My boyfriend brought me out to dinner to celebrate and I wore all red in homage to my period.
That first month cycling off was also rough, with headaches and low energy persisting for a full week. The transitions made me worried. If this was going to happen every month, could I keep with the luteal cycling? Or would I have to start taking the medication for the full month?
But the second month of cycling was better than the first. I found that I was still a little loopy for about an hour in the mornings for the first week going on the medication, but eating a bigger breakfast helped. And cycling off, I noticed slightly lower energy levels, but no headaches and no return of the anxiety, which is something I really fear.
After three months of luteal cycling, I was still feeling pretty low-energy and low-mood three days into cycling off. As I dragged myself around my house, I realized, "I don't have to feel this way." So I talked about it with my partner and my doctor and I decided to stay on the medication full time. The disruptions between cycling on and off weren't terrible anymore, but they were still disruptive and so I made the choice to just not deal with them. So far, I've been really happy with that choice.
As I start my fourth month since diagnosis, I still can’t believe what a difference medication has made. Part of me is still waiting for the other shoe to drop; for it to stop working or for the anxiety to come back anyway. I’m beyond grateful to my partner for sticking it out with me, even when things got really dark. I’m angry that it took this long for me to get a diagnosis. I feel frustrated that none of my doctors suggested PMDD to me and I had to bring the diagnosis in myself. But mostly I’m just so, so happy to finally feel like a fully functioning human being again.
If you’ve been struggling with severe PMS and think you might have PMDD, check out the Harvard article that helped me so much. And then go to your doctor, talk about it, and see if the diagnosis fits. And if they try to write you off and tell you it’s “just” your hormones? Get a new doctor. You deserve someone who will listen you and who is willing to help. Trust me — nothing feels better than fixing this will.
Editor's Note: If you or someone you know is experiencing suicidal thoughts, call the National Suicide Prevention Hotline at 1-800-273-8255 or text HOME to the Crisis Text Line at 741741. You can also reach out to the Trans Lifeline at 877-565-8860 or the Trevor Lifeline at 1-866-488-7386, or to your local suicide crisis center.