'Random crying, severe mood swings, anxiety': What it’s like to live with PMDD, a severe form of PMS

Amanda Mae Renkel started experiencing a severe form of PMS — called premenstrual dysmorphic disorder (PMDD) — when she was 16 years old. About seven days before her period began, she would have trouble concentrating, to the point where she couldn’t complete her schoolwork. Renkel also had intense social anxiety and was terrified that someone would try to talk to her.

Another distressing symptom Renkel experienced was “difficulty perceiving reality,” including repeatedly worrying that she had left the house without putting on clothes. She also experienced depression. “That place you're in mentally is very dark and lonely,” Renkel tells Yahoo Life.

She says her symptoms would progressively worsen throughout the week leading up to her periods. “By days six and seven, I generally slept as much as possible to escape the feeling,” she says. But once her period started, she would suddenly feel better. “With the onset of my period, it was like a flipped switch, and I was back to being myself again,” Renkel says.

Many women experience a mild form of PMS in the weeks before their period. However, about 3% to 8% of women experience a severe form, PMDD, which “substantially impairs daily living and requires medication or other therapies to control,” Dr. Kimberly Langdon, an ob-gyn, tells Yahoo Life.

As Dr. James Greene, ob-gyn medical director at Kaiser Permanente in Washington, puts it: Many women with PMDD “dread” the week before their period arrives, which is when symptoms typically start.

The “extreme mood shifts and mental changes” of PMDD, on top of the physical symptoms, "can disrupt all aspects of a woman’s life,” Dr. Kylie Galfione, an ob-gyn with McGovern Medical School at UTHealth Houston, tells Yahoo Life. The “fatigue, lack of motivation and inability to concentrate” can “make work and school extremely challenging or impossible.”

PMDD symptoms also include “irritability, mood swings, depression and other mental changes [that] can make it difficult to socialize and maintain healthy relationships,” says Galfione. “In most severe cases, these symptoms can lead to thoughts of self-harm or suicide.”

'It’s all very out of my control'

For one mom, Karie Fugett, her symptoms drove her to seek help and get a diagnosis. Fugett tells Yahoo Life that she’s had PMDD symptoms ever since she started menstruating, but was told “PMS is hard for everyone and to just take some Midol and suck it up.” Eventually, she realized what she was experiencing was not typical and sought help from her therapist.

“I go from feeling perfectly fine to feeling totally discontent with my life,” she says. “I feel hopeless. I fantasize about having a different life. I think a lot about how the people in my life would be better off without me. I question what the point of life is. Basically, I become a crying, mildly suicidal mess. It just didn’t seem like normal PMS to me, so I talked to my therapist about it.”

Fugett’s therapist suggested that she keep a journal to see if her symptoms correlated with her cycle. After a few months, Fugett realized they did, and she was diagnosed with PMDD. She now takes medication for anxiety and depression, but Fugett says that it doesn’t work well in the week leading up to her period and that she still experiences “impatience, dread, sadness, angry outbursts, suicidal ideation, random crying, severe mood swings, anxiety [and] food cravings.”

She says that these symptoms prevent her “from being the kind and patient mother I want to be. It’s the only time I question whether becoming a mom was a bad decision. I hate that my mind goes there, but it’s all very out of my control.”

How do you know if you have PMDD?

Diagnosing PMDD is complex. “There are no lab tests,” says Greene. “The diagnosis is made based on history.”

To receive a diagnosis of PMDD, Langdon says a woman must meet five separate criteria: First, during the two weeks before a woman’s period starts, symptoms must include severe anxiety or tension; sudden sadness or tearfulness; persistent and severe anger or more arguments with others; and decreased interest in daily activities. Second, a woman must have at least four additional PMDD symptoms. Those include difficulty concentrating; lethargy or fatigue; change in appetite, overeating or specific food cravings; excessive sleep or inability to sleep; feeling overwhelmed or out of control; or physical symptoms, such as breast tenderness or swelling, headaches, joint or muscle aches, bloat or weight gain.

Third, symptoms of PMDD “must significantly interfere with work, school or social activities and relationships with others,” says Langdon. Fourth, the symptoms can’t “be due to another psychological disorder, such as major depressive disorder, panic disorder, bipolar disorder or a personality disorder,” she says. Finally, a woman must have these symptoms for at least two consecutive cycles.

What causes PMDD?

The exact cause of PMDD is unknown. However, what Langdon calls a “major theory” is that out-of-balance ovarian hormones, including estrogen and progesterone, cause PMDD. Or, according to Johns Hopkins, it may be an abnormal reaction to normal hormone fluctuations that happen during the menstrual cycle.

Langdon explains that “since PMDD is similar to other serotonin-deficiency syndromes, such as anxiety and depression,” the condition may also be caused by an interaction between ovarian hormones and serotonin, which controls feelings of happiness, satisfaction and optimism. “In patients with PMDD, there are lower levels of serotonin,” she says.

Who is at risk of developing PMDD?

While anyone who menstruates can develop PMDD, there are some factors that put women at higher risk of developing the disorder, says Langdon. Those include premenstrual mood changes or depression; a history of sexual abuse; past or present domestic violence; personal history of depression, bipolar or anxiety; and a family history of mood disorder.

PMDD is also more common among women in their 30s and 40s and can run in families. “Genetics play a large role in the development of PMDD in women whose mothers were afflicted,” Langdon adds.

That was the case for Anna Hall, who was diagnosed with PMDD when she was 30, a year after she gave birth to her second child. “Unlike most people, I look forward to the start of my period,” she tells Yahoo Life. “I count down the days. I celebrate when it starts. One of the markers of PMDD is that your symptoms disappear, like turning off a faucet, soon after menstruation begins. I usually feel like my normal, mostly happy self around the second day of my period.”

Hall eventually sought help because she was “tired of feeling listless, unmotivated, irritable and unable to live my usual life for half of the month, every month,” she says. “I’d have trouble getting out of bed, doing normal tasks and feeling hopeless. Then those feelings would ease. I’d spend about a week picking up the pieces, and the cycle would start all over again.”

Hall didn’t initially share her diagnosis with her mother, but about a month after Hall was diagnosed, her mother sent her an article about PMDD with a note saying, “I think I had this. Maybe you do too?” Hall then learned that her mother had experienced PMDD symptoms and that her grandmother saw a PMS specialist in the 1960s, probably because she also had similar symptoms. “I didn’t know about PMDD before I was diagnosed at 30,” says Hall.

How is PMDD treated?

Although PMDD is a medical condition, it’s also classified as a psychiatric disorder, psychiatrist Dr. Jessica Turner tells Yahoo Life. “There are certain conditions, such as PMDD, that really blur boundaries about who exactly should be treating the condition,” she says, explaining that “the vast majority of symptoms are actually mental health-related.” Turner says that “antidepressants are widely considered the gold standard treatment for PMDD.” However, Langdon explains that birth control pills that “suppress ovarian hormone production” can help as well.

For mild cases of PMDD, Turner says that symptoms may be controlled with “lifestyle changes such as regular exercise and stress-reduction techniques.” Greene agrees, saying that regular exercise such as yoga, swimming or jogging can be beneficial since “physical activity has been shown to reduce stress, tension, depression and anxiety.” He adds that biofeedback and meditation, acupuncture and cognitive behavioral therapy can also help alleviate PMDD symptoms.

For moderate to severe cases, Turner says that antidepressant medications such as Prozac and Zoloft are considered first-line treatment. While some women choose to take medication every day, “interestingly, for PMDD only, women can actually just take the medicines for half the month, during the ‘luteal’ hormone phase,” which Turner explains typically starts around “cycle day 14 for the woman.” If additional support is needed, Turner says that “second-line treatment is traditional birth control pills. They must specifically have estrogen in them.”

But for some women with PMDD, even this is not enough to control their symptoms. “Absolute worst-case scenario, for very severe circumstances only, is surgery to remove the ovaries,” says Turner. “This causes ‘surgical menopause.’ There are also medications that have similar-type effects.”

Ideally, Turner says that a woman’s psychiatrist and ob-gyn should work together to treat PMDD. When this doesn’t happen, which is most of the time, women receive “fragmented care,” she says, because psychiatrists cannot prescribe birth control and most ob-gyns do not prescribe antidepressants.

Renkel is now on hormonal birth control that keeps PMDD in check, and says that running and yoga help her deal with lingering symptoms, such as anxiety and mood swings. Hall shares that she manages her symptoms with lifestyle changes and antidepressants.

“In a bigger way, PMDD has connected me to the experience of others who work to manage their mental health on a daily basis,” Hall says. “It’s frustrating, it’s time-consuming, and it doesn’t just go away, but I know I’m not alone.”

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