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Like PMS, but worse: What it's like to live with PMDD

Premenstrual dysphoric disorder affects up to 10% of women who have periods — and I'm one of them.
PMDD symptoms vary by individual, but some of the most common include irritability, panic attacks, mood swings, fatigue, difficulty concentrating, suicidal thoughts, insomnia and headaches.TODAY Illustration / Getty Images

“I can’t take this anymore.” “I want to die.” “I’m in so much pain.”

This is part of the dialogue that runs through my head every two weeks before my period. As I lie in my bed motionless, these thoughts are generally accompanied by debilitating cramps, breast tenderness, extreme irritability and suicidal ideation. While many women experience similar symptoms with premenstrual syndrome (commonly known as PMS), my combination of symptoms is classified as premenstrual dysphoric disorder, or PMDD. Think of it as a step above PMS — yes, it can get worse.

“The significant feature that differentiates PMDD from PMS is the severity of the symptoms,” explained Diana Samuel, MD, a board-certified psychiatrist in New York City. “So while people with PMS can continue to “function,” someone with PMDD has emotional and behavioral symptoms that affect their daily functioning.”

According to Cleveland Clinic, PMDD affects up to 10% of women who have periods. The condition is also more prevalent among women with a history of anxiety and depression, PMS and a family history of PMS/PMDD or other mood disorders. I have both anxiety and depression so that rings true for me.

PMDD symptoms vary by individual, but some of the most common include irritability, panic attacks, mood swings, fatigue, difficulty concentrating, suicidal thoughts, insomnia and headaches.

It is typical for those with PMDD to feel an uptick in these symptoms seven to 10 days prior to a period and then they usually subside quickly after it starts.

I first began to notice my symptoms in high school when I couldn't function as I normally would prior to getting my period. My most common and disruptive symptoms are irritability, difficulty concentrating and suicidal thoughts.

When I was younger, I’d often go to the nurse’s office at school because of the immense pain I experienced. I sat in class staring at the wall because all I wanted was to sleep, but I was forced to pay attention. As a result, I’d snap at my teachers and classmates — and since I'm a shy person, it was definitely noticeable that something was not quite right.

As a current college student, my symptoms have only progressed and continue to disrupt my ability to function normally. The symptoms don't show up as physical pain as much anymore, but rather intense mental anguish and suicidal ideation. It’s hard to decide which is worse, but I’d say the latter.

Despite these intense emotions, I do force myself to attend class, but my social life is completely different. I don’t speak to anyone in class and I don’t talk to my friends, but instead I keep to myself. I’ll either be isolated in a corner with my headphones on or in my bed with a blanket over my head at the dorm. Sometimes I’m able to find the energy to work out and manage to take care of basic hygiene. At other times, I can't at all. When it's bad, I can go between three to five days without showering, leaving my room or talking to anyone. In a perfect world, I’d wait for it to pass, but my anxiety disorder makes that physically impossible. I have to keep pushing despite the pain otherwise I’ll get behind and become even more stressed.

While many people don’t equate periods with intense feelings of depression, for some with PMDD, that’s the most difficult part. The cause of PMDD is unknown, but there are some common theories about why people experience these extreme mood changes.

“As the estrogen level falls, that affects your serotonin,” says Diana Bitner, MD, an OB-GYN and resident sexual health expert for Urban You For Me. “Serotonin is the brain chemical that's related to mood and get up and go energy ... So serotonin is really what us girls depend on to feel normal to feel like ourselves and as our estrogen levels fall, so does the serotonin, and most of the research around PMDD has pointed to a change in the serotonin metabolism and a change in the serotonin receptors.”

Despite this research, it is only recently — in the past year or two — that my family began to notice and believe my PMDD symptoms.

My twin sister always tells me, “You don’t look like yourself. I can see it in your eyes.” She isn't wrong. After I come down from these episodes, I feel like a completely different person. While I am expecting these intense feelings to occur, each time they feel brand new, making it hard to cope.

Even my best friend knows and I don’t even have to be physically in her presence. She can solely tell based on our conversations. It’s during my PMDD episodes where I attempt to cut off all relationships in my life and convince myself everyone hates me.

I have explored treatments for PMDD. This entailed starting therapy, going on antidepressants and starting birth control.

“Cognitive behavioral therapy (CBT) can have a really significant impact if you get therapy specific to working around your mood shifts,” Samuel explained. “For instance, say because of PMDD you're really fatigued. CBT can help you come up with some things you can do and skills that you can use during those periods to kind of combat some of those issues.”

I tried CBT and it didn't work for me, but I found that principles of dialectical behavioral therapy (DBT) such as distress tolerance to be beneficial. When therapy didn’t work, I turned to psychiatric medication. At first I was hesitant, but when you’re really suffering, you’ll try almost anything.

“SSRIs, which are the class of antidepressants, is technically the first line treatment for PMDD,” said Samuel. “I've found patients say that it can be quite effective in treating those mood symptoms during those periods, so that they don't have these really significant drops in their mood or irritability or whatever their symptoms might be.”

Currently, I’m on an SSRI I’ve found to be moderately helpful. I still experience pretty severe symptoms each month, but definitely not as bad as they were in high school.

My last resort was starting birth control. I was skeptical because I really didn't want to mess more with my hormones if that was what was causing the problem in the first place.

“Some people feel better on the pill. Some people feel worse,” said Bitner. “It just takes away that fluctuation — and for some people that's magic, because it just takes away the estrogen highs, the estrogen lows, and it just keeps it really stable.”

I found birth control to be the least helpful and I’m no longer on it. I still experienced my symptoms at the same intensity and developed other side effects, which I didn’t want or need. However, birth control can still be a feasible option for some as Bitner mentioned.

Overall, I can’t say any treatment option has really worked for me. As my therapist says, I’m a “tough nut to crack" — but that doesn’t mean it won’t help you or a loved one. Even if there’s a slight reduction in the intensity or frequency of symptoms, sometimes that's enough.

If you have PMDD and are reading this, you’re not alone in this fight. While others might just dismiss your symptoms as PMS, know that what you’re fighting is more than that. Each month you have to fight this battle between your brain and body and it’s not easy. Even when it seems impossible (and trust me I’ve been there), it does get better. Just think back to your last period and how you felt after — that’s what’s on the other side.