'I was very in the dark': PMDD can be deadly but many women go undiagnosed for decades

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1 in 3 women with premenstrual dysphoric disorder (PMDD) will attempt to take their own lives, and 72% experience suicidal ideation .

Amanda Long, 28, knows these statistics all too well.

At 14, the onset of her menstrual cycle brought debilitating symptoms. She experienced heightened anxiety followed by debilitating depression and periods of binge eating, but was left in the dark as to why she felt this way. In the throes of a depressive episode, her symptoms had gotten so bad that she felt the world would be "better off without her." During her senior year of high school, she came dangerously close to attempting suicide.

"If I was in my right mind, I never would have done anything like that," Long says. When her depression lifted, she thought she was cured. Until she entered the luteal phase of her cycle again.

She’s since found treatment methods that have allowed her to manage her symptoms. But many women are still without a PMDD diagnosis, which they say a lack of education and medical gaslighting makes hard to get — with PMDD having an average diagnostic delay of 20 years .

What is premenstrual dysphoric disorder (PMDD)?

Premenstrual dysphoric disorder (PMDD) is a much more severe form of premenstrual syndrome (PMS) affecting 3-9% of women of reproductive age.

Classified in the DSM-V as a “depressive disorder,” symptoms occur during the premenstrual, or luteal, phase of the menstrual cycle and subside within the first few days of menstruation.

Symptoms include mood changes, depressed mood or feelings of hopelessness, anxiety, irritability or anger, hypomania or insomnia, increased interpersonal conflict and other symptoms of depression. The exact cause of PMDD is unknown, but it may be linked to an abnormal reaction to the natural rise and fall of estrogen and progesterone during the menstrual cycle that causes a serotonin deficiency in the brain.

According to Dr. Franziska Haydanek , an OBGYN and online health educator, PMDD often gets misdiagnosed with other mood and anxiety disorders, such as major depression or bipolar disorder. Or, it is brushed off as typical PMS.

“That’s why tracking the symptoms and noticing where it lines up with your menstrual cycle is so important. You can see recurrent themes,” she says. “(If) this happens every four weeks, right before your period, it’s more likely to be PMDD than something else.”

M egan Rogers , 26, who lives with PMDD and uses TikTok to educate others, says PMDD is period-related but a diagnosis usually requires the involvement of more than one type of doctor.

"There's very little ownership of it," Rogers adds. "We have a siloed medical system, but for a condition like PMDD that spans so many different areas, no amount of therapy is going to fix this."

PMDD can be treated with a combination of both serotonin reuptake inhibitors (SRRIs) and birth control that prevents ovulation, and there is early research supporting holistic interventions.

"The best option is a joint effort and really finding the practitioners who feel comfortable with that," Haydanek says. "Because some OBGYNs may not prescribe SSRIs. And conversely, psychiatrists may not feel comfortable prescribing birth control pills."

'For about half my life, I've been very in the dark'

For over a decade, Long had no idea that her symptoms were directly related to her hormonal cycle. She transferred high schools at 15, thinking that her depression was a product of her environment. Her attendance dropped to the point where she was brought in to speak with an administrator, and she felt overwhelmed by feelings of shame and confusion.

"It was 2009 when I first experienced PMDD. And at that point, we didn't even have language for it. It wasn't in the DSM , it wasn't in the WHO ," she says. "So even if there were people around me who felt that something was up, I didn't have the language to articulate it, and neither did anyone else."

When her serotonin dropped during depressive episodes, she would reach for sugar and binge eat. This only worsened her mental health.

"I was self-soothing and I was self-numbing, and I was making my hormones even more out of whack by the amount of sugar I was eating, which was only worsening my PMDD ," she says.

It wasn't until her 20s, when began tracking her cycle and mood on an app, that she made the connection between the luteal phase and her experience of mental illness. After thorough research, she presented her symptoms to a gynecologist, and was diagnosed with PMDD earlier this year.

Likewise, Rogers first experienced symptoms at 13, described them to her gynecologist at 18 and wasn't diagnosed until she was 24. For 11 years, she felt like she was living a double life.

"Based on the symptoms I described, I should have gotten a diagnosis, but I didn't. They just said, 'Oh, you have a bad period,'" she says.

For Long, a diagnosis has allowed her to establish a holistic treatment plan to manage her symptoms.

"I feel like I finally have answers," Long adds. "But for about half of my life, about 14 years, I've been very in the dark. I am still processing and trying to understand what has happened."

Now, she's one month symptom-free.

Many women still await diagnoses

Meanwhile Rachel Franklin, 28, suspects she has PMDD but has been struggling to find a provider who will listen. She has known since puberty that something was "super wrong," but she didn't know how to convey it. "I felt like I was going insane before my period," she says.

Franklin's primary care doctor referred her to a psychiatrist when she said she suspected she had PMDD, but that provider hypothesized she may have another condition that Franklin felt didn't jive with her symptoms.

"So now I'm tracking all my symptoms on paper," she says. "I think I want the diagnosis because I just want the clarity. The closure of trying to finally figure out what's wrong with me."

She's hopeful that an appointment next month may finally provide answers.

'There's always going to be gaslighting,' but the main issue is education

For each of these women, not having the language to identify or describe their disorder has been nearly as debilitating as their symptoms.

"There's always going to be gaslighting there for female pain ," Rogers says. "But a big piece of the puzzle as well is the actual lack of knowledge."

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According to Haydanek, doctors are required to complete continuous medical education annually. This year, an article on PMDD has been added to the training options.

"OBGYNs are trying to continuously reeducate ourselves," she says. "But as always, we could always do better."

Long agrees that more education on PMDD, such as learning about it in middle or high school health class, would have "changed the trajectory" of her life. Now, she hopes that other women won't have to suffer like she did.

"The hardest part of this disorder is living through an episode. The second hardest part is identifying the symptoms to get a diagnosis. The third hardest part is figuring out how to treat it," Long says. "The good news is that it is entirely treatable and you can absolutely recover from it."

This article originally appeared on USA TODAY: 'I was very in the dark': PMDD can be deadly but many women go undiagnosed for decades