Your PMDD Primer: A Necessary Guide to an Under Researched Disorder

Ever since I got my period at age 12, my pre-menstrual symptoms have been intense.

It was like clockwork: for about a week and a half every month, I couldn’t get out⁠ of bed. I couldn’t focus on the simplest tasks. Even the most minor inconveniences or disagreements could send me spiraling: my suddenly overwhelming anxiety made mountains out of molehills.

And then, within the first couple days of my period⁠ , the cloud lifted. I could breathe again.

At first, I thought this was normal. All the descriptions of PMS I could find described symptoms like the ones I was experiencing. Fatigue? Check. Irritability? Check. Mood swings? Double check. How could I know I was any different?

Any part of me that knew something wasn’t right was immediately crushed by everyone I knew, from my mom to my doctor. “Pain,” they’d say, “is part of being a woman.” (Even though not only women who get periods).

I’d heard of the term “ PMDD⁠ ,” but I barely understood what it really meant. Honestly, I just kind of assumed I was crazy. It wasn’t until years later that my therapist fully explained the disorder to me.

Everything fell into place. I could finally explain myself.

I wasn’t “crazy.” I had a mood disorder. Other people had to have been struggling with this, right? There was no way I was the only one. But if that was true, then why didn’t I – or anyone else I knew, for that matter – know about it? Why had I wasted years of my life pushing people away, feeling miserable, and not even understanding why?

I’m going to make sure that nobody else has to go through what I did.

What is PMDD, anyway?

PMDD stands for Premenstrual Dysphoric Disorder. While many people experience some form of PMS⁠ , PMDD takes it to the extreme. Symptoms include intense depression, anxiety, and lack of focus, in the week (sometimes two) leading up to your period.

This time frame is known as the luteal phase (or “hell week,” by those who’ve been living with PMDD for a while). Progesterone increases during this time. People with PMDD are exceptionally sensitive to this hormonal change, and their symptoms are a result of that sensitivity⁠ .

Interestingly enough, people with ADHD are more likely to experience PMDD than those without. However, this correlation has barely been studied by the medical community, despite the backlash from ADHDers. PMDD is characterized by an unfortunate and often infuriating lack of information, despite the fact that up to 8% of people experience it (and even more go unrecognized).

Why has PMDD been ignored?

If you have a period, you know there’s a stigma surrounding the topic. Lack of education, along with cultural misconceptions surrounding menstruation⁠ , contribute to the unwillingness to learn about this disorder. Tampon and pad companies famously shy away from using red liquid in their television commercials, and an estimated 1 in 10 girls in Africa miss school because of menstruation.

Bodies assigned female sex⁠ are pretty under researched in general – scientists only just counted the amount of nerve endings in the clitoris – so this might not come as a surprise. New research is coming out, but most of what we know is an amalgamation of medical info and anecdotes. After all, it’s hard to learn more about a disorder that some people might not even believe you have.

Misdiagnosis is another huge obstacle standing in the way of understanding PMDD. As mentioned earlier, many of the symptoms can be written off as regular PMS. When their severity is understood, however, they often get misdiagnosed as other disorders, such as bipolar disorder or BPD, leading to improper treatment.

Though the symptoms overlap, the key difference is hormonal sensitivity. Those with PMDD experience their symptoms exclusively during the luteal phase, and are more vulnerable than others when it comes to hormonal shifts. If you are experiencing such symptoms and are unsure of the cause, a period tracker app* can help you find any possible correlations.

How is PMDD treated?

The first line of defense against PMDD is SSRIs (selective serotonin reuptake inhibitors), a type of antidepressant. They can be taken regularly or only during the luteal phase; either method can work. The dosage depends on the patient, but it is usually on the lower side.

While this method definitely works for some, it’s not a cure-all. I tried both escitalopram (Lexapro) and sertraline (Zoloft), and neither worked well for me. They both honestly exacerbated my symptoms and ended up making things worse. That being said, I know tons of people who’ve greatly benefitted from SSRIs! Everyone’s body is different. The key is to arm yourself with knowledge and be well-aware of any and all side effects before taking these medications.

The next method is oral contraceptives. Colloquially known as “ the pill⁠ ,” these can change levels of progesterone⁠ , estrogen⁠ or both, and make cyclical hormonal shifts less dramatic. Before doing this, alert your healthcare provider⁠ to your concerns and sensitivity to hormonal changes, and read up on all possible side effects.

The last method is a bit controversial: antihistamines. The evidence backing it up is mostly anecdotal. However, it’s been the best method for me thus far, and is the most accessible out of the three. I take Zyrtec during my luteal phase, though Pepcid is also a good option. It takes about an hour or so to kick in. Research on this is limited, but trying it can’t hurt. Still, be wary – be careful with strong medicines like Benadryl, which can make you drowsy, and make sure to check for any possible adverse effects with your current meds.

In severe cases, most commonly where the person’s life is at risk, oophorectomy (removal of the ovaries⁠ ) may be considered. This would put an end to menstrual⁠ hormone fluctuations by stopping the menstrual cycle⁠ entirely.

If you think you have PMDD, talk to a healthcare provider about these and other treatment options. That being said, it can’t be ignored that many people who do seek treatment for PMDD are often ignored or misdiagnosed. Still, it is important to make an attempt and be well-informed before taking any big steps.

So, You Have PMDD: What Now?

Now that you know what’s wrong, you can inform your loved ones when your “hell week” starts. While opening up about this might make you feel awkward or vulnerable, it will provide you with an invaluable support system. Before I knew I had PMDD, I lashed out unfairly at the people around me, stuck in this cycle of irritation and helplessness. Now that I can predict my mood swings, I can identify the issue and communicate effectively.

Ultimately, a strong sense of community is what will carry you through the tough times. Online PMDD forums are a great place to start. There, you can vent your frustrations and collect as much information as you need. I’d advise you not to stop there, though. A mental health professional can provide you with the necessary tools to navigate your thoughts and feelings. When it comes to any mental health issue, a good therapist is irreplaceable.

PMDD can be a scary, frustrating experience. As with all mental health issues, identifying the problem is half the battle. Though you may encounter many roadblocks on your journey to treatment, it’s not the end of the world! Whatever you decide, know that you’re never alone.

* Editor's note: If you're using or are thinking about using cycle trackers, just be sure you're also aware of the privacy risks, and doing what you can to minimize them if you are going to use one.  We do know and can vouch for the folks at Euki, if you are looking for a safe one to consider.