There’s a monster inside me: living with premenstrual dysphoric disorder

It has no warning label, no concrete list of instructions, no ‘How to, for Dummies’, and no way to fully prepare for its inevitability every month, even when you know it’s coming.  Without fail, it arrives as if on schedule but, even then, it’s different every time and there’s no way to dictate which level of unbearableness it’ll be.

It’s 3 a.m. in New York City and Jane (first name changed for privacy reasons) Menna is wide awake, prowling the Internet trying to find an online support group to talk about what she’s going through. Insomnia is just one of the many symptoms associated with Premenstrual Dysphoric Disorder (PMDD), a severe form of Premenstrual Syndrome (PMS).

“My mind is racing a mile a minute and I can’t sleep,” Menna says. “I have such anxiety right now and very unsettling thoughts.”

Menna adds she has an upcoming appointment with her gynecologist to go on birth control to “level out” her hormones, and was even given a suggestion to go on antidepressants. Despite her behaviour when she’s on her period, Menna says she’s not depressed all the time.

“It’s only when I am getting — and get — my period do I shift to this erratic state of mind,” she says.

Symptoms of PMDD

According to a report written by Barb Komar from the Provincial Reproductive Mental Health, called A Positive Approach Premenstrual Syndrome (PMS) and Premenstrual Dysphoric Disorder (PMDD), in the week before menstruation, approximately 80 per cent of women experience mild to moderate physical and emotional symptoms which typically don’t interfere with their usual level of daily functioning.  This is PMS and the body’s way of letting women know their periods are about to start.

In the same report, Komar writes the term PMDD is “another way of saying severe PMS”, and that dysphoric means a sense of disquiet, restlessness, or malaise. PMDD affects about 3 to 8 per cent of the women with symptoms so severe they interfere with their daily functioning and/or personal relationships.

Its laundry list of symptoms are about as daunting as they are for the women who suffer from it, although it’s something many women may not realise they have, mistaking it as “the norm,” or a mild annoyance.

The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5), established a list of criteria for PMDD’s diagnosis, which includes: anxiety and tension, including feelings of being “on edge”; mood swings; depression; feelings of hopelessness; irritability; feeling overwhelmed and out of control; fleeting negative thoughts; fearing hurting themselves or others; decreased interest in usual activities; difficulty concentrating; feeling lethargic and lacking energy; insomnia and other difficulties sleeping; changes in appetite; physical symptoms, including breast tenderness or swelling, joint and muscle pain, and extreme bloating and weight gain.

For a PMDD diagnosis, symptoms must be present for at least a week prior to menstruation, fade when a woman’s period begins, and be absent a week after it’s done. According to Komar, since most symptoms of PMDD mimic those of Major Depressive Disorder, to make a diagnosis the timing of symptoms is the key.

In the days leading up to a woman’s period, PMDD is at its worst; once menstruation starts PMDD starts getting better but for many, depression stays the same.

Although there’s no specific or clear way to diagnose PMDD, other measures are usually taken to rule out other illnesses. Komar suggests keeping a daily diary and creating a chart to rate how bad the symptoms are over a couple of cycles as a means to diagnose PMDD.  The report says says some reasons for charting is to identify symptoms and their timing, learn about when they occur and what makes them worse or better, be used as a guidance for what treatments work or don’t work, self acceptance, and empowering one’s self and conveying to others what some specific needs are.

Affecting day-to-day life

Menna’s symptoms have gotten so bad she’s created a calendar that she’s placed on her fridge, mapping out her cycle day-to-day. She does it so she knows when it’s coming, because it’s such a horrible, overwhelming feeling. She says the calendar is there to remind her in advance of how crazy and intense her body is about to get.

“My friends and sisters will actually ask me if I’m on drugs because my speech and personality will shift,” she says. “It’s like a constant up and down roller coaster.”

Komar’s report states women may be at a greater risk of PMDD if they have a history of depression, postpartum depression, if there’s been a history of depression and PMDD within the family.

Because depression is a huge symptom of PMDD, suicide is often a risk for some women. According to a Harvard Medical School report, approximately 15 per cent of women with PMDD will attempt suicide.

“The very, very scary thing is I think of suicidal thoughts,” Menna says, hesitantly.  “It’s making me sick that I just said that.”

Women shouldn’t be made to feel bad for being on her period

Heather Prost, a student, says she also gets suicidal tendencies, even though she doesn’t suffer from depression anymore.

“The one day leading up to my period, I just cry and cry,” says Prost.  “When I’m on birth control, I at least know what to expect.”

Prost adds that whenever women bring up that she’s on her period, it gets brushed off and people “trivialize the pain and emotions women are experiencing.”

“With things like PTSD (posttraumatic stress disorder), it’s ‘hush hush,’ and depression isn’t taken seriously, when it should be,” she says.

The same goes for women who are on their periods, especially those suffering from PMDD.

“People throw comments around like  “oh, she’s just on her period,” says Prost. “We shouldn’t have to say, ‘I’m sorry I’m on my period,” but we do.”

Detecting PMS and PMDD

The phrase premenstrual syndrome was coined in 1953 by Dr. Katharina Dalton, and established the first clinic in Britain to treat the condition. Dalton’s contribution to understanding hormone disturbances was instrumental in her identifying and treatment of problems unique to women; yet, there was a lot of controversy in the ‘80s and ‘90s surrounding the diagnosis of PMDD, with health care professionals debating whether or not it was a real condition.

The first signs of premenstrual symptoms appeared in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders in 1987 as “late luteal-phase dysphoric disorder,” but was renamed in 1994 to premenstrual dysphoric disorder. Patients with symptoms were allegedly given a diagnosis of “depressive order not otherwise specified.”

With the diagnosis taking until 2013 to be listed in the list of depressive disorders in the Diagnostic and Statistical Manual of Mental Disorders, there is still much to be done and understood about the condition, and remains an active research topic.

PMDD is not something many women may be aware they suffer from

For many women, living with PMDD has either gone undetected, or something they’ve only recently started suffering from. Menna’s condition is the latter.

I was not always like this,” she confesses.  “This just started to happen in the last two years.”

Menna started googling symptoms earlier this year, and didn’t know there were other women out there suffering like her.

“In the last year it’s now taking on a life of its own.”

As a mother, Menna feels her daughter needs her to be 100 per cent every day. Menna adds she’s fortunate to have the help of her sister whenever she needs it, and has her sister stay with her when she knows that time of month is coming.

I can’t take off several days a month because of my period,” she says.

More compassion would go a long way

Prost thinks there’s a lack of understanding about what women go through each month and that there should be sick days allotted for when women can’t get out of bed when they’re experiencing PMS, PMDD, or their periods.

“It’s okay to call in sick when you have the flu, but it’s not acceptable when women are on their periods,” she says, frustrated.

Prost didn’t realise there was a name or even a diagnosis for PMDD until very recently, assuming that “everyone” goes through painful periods and has been made to feel like what she’s going through isn’t a big deal.

“I get incredibly irrational, and fight the most with my boyfriend,” she says, on the days leading up to her period.

In addition to the irrational thoughts, fights, crying, and suicidal thoughts, Prost adds that she eats a lot right before, craving mostly chocolate and salty things.

“I wish I could sleep for the duration of my period,” she sighs, half-smiling. She adds a big problem in understanding what women go through is there’s a lot of stereotypes and misconceptions about women’s periods.

Prost feels like the issues should be discussed more to raise more awareness and that the more it’s talked about, the more people will understand.

“What goes on with women’s bodies is a big mystery for men and even for women because no one wants to talk about it,” she says, bewildered it’s still an issue in today’s society.

Prost adds women should have the option to talk to a third party, free of any emotional connection and free of judgement, about how they feel when they know their periods are coming.

“Everything comes crashing down every month,”  she says, brow furrowing slightly. She adds she always feels better whenever she vents, but it isn’t something she wants to necessarily unload on her boyfriend all the time.    

Prost says a big problem in understanding what women go through is there’s a lot of stereotypes and misconceptions about women’s periods.     

“I feel like a lot of the time people get uncomfortable with women’s bodies,” she says. “There’s lots of jokes out there that make a serious issue less serious.”   

Turning PMDD into a better experience                   

While there’s a lot of negativity associated with PMS, PMDD, and periods in general, Komar’s report says there are positive aspects that can result from a woman’s cycle.

The report states women often feel more creative, are able to express themselves when perhaps they weren’t able to before, become more aware of their needs, are more sensitive and may even feel more confident.

“When you experience an emotional imbalance during PMS, it is a powerful warning sign to address and resolve the underlying imbalance,” Komar writes.

To alleviate symptoms, Komar says finding ways to treat them goes a long way: exercising, improving sleep patterns — such as getting up at the same time every day, not going to bed too early, not taking naps, avoiding alcohol two hours before bed, reducing caffeine intake and not drinking it past 2:00 p.m — doing activities that help destress, which includes anything to relieve pressure and impact the body emotionally, doing things for oneself and finding ways to rest and relax, among other things.

A month has passed since Menna’s first experience with PMDD, and she says a lot has changed since then, including things in her home environment and what she eats. Menna says she’s eliminated certain foods when she’s on her period, and so far it’s helped.

Soda, tea, candy, bread, pizza and chips are just a few things Menna has cut out of her diet when she’s on her period, and has replaced sugar and salty cravings with water instead.  Menna hopes her next step in making PMDD easier to live with will help solve some problems.

I spoke with a doctor who focuses on vitamins and diet. She will be doing some tests that aren’t covered by my insurance,” Menna says.

The last month has been a complete 180 for Menna, who said she’s even joined a support group and spoken about it with her partner of five years to raise awareness and understanding of PMDD. She said the group she’s in is the one place she feels comfortable to talk about how she feels, but feels empowered knowing she’s not alone.  

Menna says speaking with her partner was difficult, although necessary, because she didn’t feel like she was getting the support she needed, especially since they have a child together. Relived, Menna said things have improved because she finally made that step to open up to him.

“This time around he was amazing, which made me feel calm and safe and secure in my home,” she says, and it’s evident in her tone.

Although PMDD’s causes are still widely unknown, it’s something that’s slowly getting talked about more.  Women who may not know they have it, or didn’t know there was an actual name for it, are coming forward and finding peace knowing there’s a reason why they get the way they do each month.

While Prost is comforted knowing she’s not alone in her dealings every month, she continues hoping for understanding and acceptance towards women’s periods.

“There should be a resource when women are experiencing depression, anxiety and low self esteem,” she says.

And then Menna, who said she’s a firm believer that PMDD has been brought on by the birth of her daughter. Now that she knows what beast she’s dealing with, she’s optimistic things will get better.

PMDD got the best of me when I was my weakest,” she says.

Not for much longer.

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