Shine a Light on PMDD - April is PMDD Awareness Month

BOSTON, MA, March 29, 2019 -- A global awareness campaign will kick off this April to help “Shine a Light on PMDD” on a little known, debilitating and life-threatening condition that takes an average of 12 years to be correctly diagnosed. 

Premenstrual Dysphoric Disorder (PMDD) is a cyclical, hormone-based mood disorder which impacts approximately 1 in 20 women and individuals assigned female at birth (AFAB) of reproductive age - a staggering 60 million worldwide. With symptoms including severe depression, overwhelm, and anxiety appearing in the two weeks before menses, PMDD takes a toll on sufferers’ ability to work and maintain relationships with partners and family. In the 2018 Global Survey of Premenstrual Disorders, out of 1,425 patients with prospectively-confirmed PMDD: 

● 16.8% reported having lost a job due to PMDD 

● 56.7% reported having lost an intimate partner relationship due to PMDD 

● 98% and 97% feel PMDD puts a significant strain on their intimate partner relationship and family relationships, respectively 

● 42.7% reported problems with parenting due to PMDD, with 10.5% feeling completely unable to parent during PMDD 

The relentless emotional and (for some) physical pain also drastically increases the risk of suicidal behaviors. In the same survey, 30% of patients with PMDD reported that they had attempted suicide to escape their symptoms. Sadly, this number does not include those with PMDD who have died by suicide, which suggests that 30% is a low estimate for the rate of suicidal behaviors in PMDD. Appropriate identification and treatment of PMDD are therefore important not only for reducing suffering but also for saving lives. 

The same survey also showed it takes an average of twelve years and six healthcare providers to receive an accurate diagnosis of PMDD. After years of suffering, individuals with PMDD describe learning about the disorder as a ‘lightbulb moment’. 

“PMDD has been invisible for far too long,” according to Amanda LaFleur, Co-Founder & Executive Director, International Association for Premenstrual Disorders (IAPMD), the global leader of PMDD awareness and education. “It’s underdiagnosed, misdiagnosed and, at worst, the lack of understanding leads to harmful ridicule and shaming of suffers. During PMDD Awareness Month we need to create millions of life-changing lightbulb moments across the globe so people can get the support and treatment they need!” 

This year, IAPMD is again collaborating with a coalition of organizations, including U.S.-based Me v PMDD and U.K.-based Vicious Cycle: Making PMDD Visible, to ‘Shine a Light on PMDD.’ Resources to support awareness-building are available on pmddawarenessmonth.org. Website visitors can access the PMDD Awareness Month Toolkit, find facts and figures about PMDD, create a fundraiser, and share their story.

Individuals with PMDD are encouraged to add their voice to the women's reproductive and mental health movement and receive timely updates on work underway to inspire hope and end suffering in those with premenstrual disorders. 

“This is a galvanizing movement in women’s health,” according to Sandi MacDonald, IAPMD Board President. “PMDD is a perfect storm where #MeToo and #TimesUp, meets mental health awareness, meets suicide prevention. This campaign will be that ‘eureka!’ or ‘light bulb’ moment of insight, and then sufferers and activists around the world are empowered to raise awareness of PMDD and increase access to effective treatment options.” 

While PMDD is directly connected to the menstrual cycle, it is not a hormone imbalance but rather a severe neurobiological reaction to the natural rise and fall of estrogen and progesterone. Symptoms occur the week or two before menstruation and go away a few days after bleeding begins. There is no blood or saliva test to diagnose PMDD, but these tests can rule out other underlying disorders. Diagnosis is done by tracking symptoms for at least two menstrual cycles. As noted above, women and AFAB individuals with PMDD are at an increased risk for suicidal behavior. Although PMDD has been included in the Diagnostic and Statistical Manual of Mental Disorders (DSM) and International Classification of Diseases (ICD) for years, it continues to be disregarded or misunderstood by doctors and the general public.

# # # 

Organizational Contacts: 

Amanda LaFleur

Co-Founder & Executive Director, IAPMD 

amanda@iapmd.org 

www.iapmd.org 

1-800-609-PMDD (7633) 

Laura Murphy

Project Co-Founder/Director, Vicious Cycle

hello@viciouscyclepmdd.com 

www.facebook.com/viciouscyclepmdd 

Twitter: @viciouscyclepmd 

+44 7739 342590 

Sheila H. Buchert Co-Founder & COO, Me v PMDD, Inc. 

sheila.mevpmdd@gmail.com 

www.mevpmdd.com 

727-421-1489   

PMDD and Your Brain

A while ago, I read the book Women’s Moods: What Every Woman Must Know about Hormones, the Brain, and Emotional Health. It was a great book about overall hormonal health and described how hormonal issues are physiological occurrences in the brain that manifest as emotional behavior, because the hormones involved affect the areas of the brain that regulate our emotions.

On the one hand, I wished I’d read this book years earlier than I did, as it was first published in 1999. On the other, I’m glad I didn’t. While the authors completely explain the devastating effects women's hormones can have on your emotional life, they are firmly in the camp of using medication to treat these brain disorders that affect women throughout our reproductive years.

That’s fine if you want to go that route, but there are other options available now to women who suffer from hormonal issues. In 1999, these options were given a cursory mention and dismissed. Which means if I’d read the book any earlier than I did, I would have come to the conclusion that there was no alternative to my PMDD, short of medication.

That, for me, would have been very depressing indeed.

I know there are millions of women out there who have severe hormonal issues that may well require medication to control them—notice I say control them—not manage them. Me, I manage my symptoms through nutrition and exercise and positive lifestyle choices. If I took medication I wouldn’t need to be so vigilant about my health—the medication would theoretically handle the problem for me. But in my case, with the PMDD, I can’t see taking medication every day for something that only occurs a few days a month.

Still, there are days when the thought of it tempts me. But most days it does not.

As I said, to have read this book any earlier would have been devastating for me. Because the authors insist over and over that without treatment, your hormonal issues will only get worse. That there is no light at the end of the tunnel without treatment—this is absolutely true--but their treatment of choice is not mine.

That aside, I was able to read the book and learn much about the causes of hormonal issues and how and why these issues can and do get worse later in life without some type of intervention.

Hormonal issues are a very serious and practically rampant problem for women. Yet some days it seems like the only people paying any attention to us are those who can profit from our condition(s). Most of the information women receive regarding "hormonal imbalances" (a term I take exception to) comes from companies whose drugs have been approved for treatment of these "imbalances."

We need more than to be told a certain medication (or two, or three) can solve  our problems. We need to understand the underlying causes of our hormonal issues and find ways to heal ourselves from within and prevent the need for chemical solutions. We need to understand the unique female brain/body connection and how it makes us vulnerable to mood problems at the most challenging times in our lives. Puberty, pregnancy, post-partum, peri-menopause, menopause, and post menopause.

Every time you have a child, your hormones undergo an enormous amount of stress, and yet society acts as if there’s nothing to it. Life goes on and you cope.

But what happens when your ability to cope fails you? What happens when, as these authors aptly describe it, you have an internal “earthquake” and mood disorders erupt?

All this attention is given to heart health, but brain health is equally important. We need to learn to care for our brain as diligently as we do our heart. Not only the heart can be compromised by a woman’s genetic make up, life experiences, and stress load, but so can the brain.

If our brain doesn’t work right, we don’t work right, and all sorts of life-chaos can happen. No amount of "being strong" or "powering through" is going to re-regulate a brain that has gone askew. It just isn’t going to happen.

The way this book and many others describe it, our brains have neurological pathways that become worn over time like ruts in a road. When any situation arises, our brains immediately locate the memory of how we dealt with that situation in the past, so that we can effectively do so again. And each time we deal with that situation again, a new pathway is created over the old pathway.

This works fine if your brain is healthy, or operating at optimum level. But what if your brain is not? Then your brain is creating new pathways over damaged roads, and only more damage ensues.

Genetics plays a factor in this, of course, but so do your thought processes. In short, how we deal with stress affects our hormones, which in turn affects our brain. This stress can come from any and all sources, trauma from an accident or abuse, be it physical, emotional, sexual, mental, spiritual, financial, you name it, or from naturally occurring life events such as birth, death, marriage, divorce, loss of a job or health or relationship, to name just a few.

When your hormones are doing what they should, your body deals with these stresses in a normal and healthy way. When your hormones are compromised, your body and brain do not. Little stresses can be magnified into big stresses, completely out of proportion to the situation. When your hormones are compromised and your brain is dysregulated, you can feel like you are under attack 24/7. Your brain makes no distinction between the threat of an oncoming car or someone who simply disagrees with your point of view. Both, to your dysregulated brain, are threats to your very existence.

It’s not logical, in fact it is completely irrational, but that’s what it is. Your dysregulated brain is not properly processing the threat.

This is why women with mood disorders like PMDD or even simple hormonal fluctuations seem so irrational at times.

But we’re not crazy, or imbalanced--far from it. Rather, something has compromised our hormonal system, something that has yet to be scientifically identified and verified, something we have no more control over than we do an allergic reaction.

This is not to say there is nothing we can do to prevent our hormonal eruptions.  We all know that once one begins, it is unstoppable, because the PMDD brain is out to win at all costs.  But there are ways to minimize our eruptions, and this blog* is full of tips for that.  If you're looking for the information all in one place, try my book, PMDD and Relationships, or, for the supportive partner, PMDD: A Handbook for Partners.   Both are based on the posts in this blog.

*Use the search box at the top of the page to locate topics you are interested in reading more about.  Type in the subject, and if I have written anything about it, a list of posts will appear.  This will save you a lot of time spent scrolling past stuff you're not interested in.

The Voices of PMDD: Sharing our Struggles

Today we have a guest post from a woman who has taken what I think is the very healthy step of naming her PMDD.  Naming your PMDD helps to separate you from your disorder.  You are not your PMDD and that is what we all need to remember when PMDD strikes.  We are more than our PMDD, and better than our PMDD.

I call her Agatha. 

Some of you may have met her unknowingly. Her presence is noticed only by my few nearest and dearest...and even most of them don’t understand her. I’ve decided to talk about Agatha because I spend so much time as/with her, I am tired of trying to explain myself, or feel guilty, or desperately sad that things annoy me when they shouldn’t even make a shadow. 

Agatha is my PMDD...or who I am for up to two weeks out of the month. Yes...EVERY month. I have PMDD...Pre-Menstrual Dysphoric Disorder. Have you heard of PMT (or PMS if you’re American)?  Well, PMDD also has to do with the menstrual cycle, but is a million time worse. Maybe a billion...at least. After I have ovulated and the hormone levels change, so do I. I become someone that has taken me years to recognise, and more to understand. I describe it as having the ‘Dementor’s Kiss’; Harry Potter fans will of course understand the reference. For the rest of you, that is when all of the happiness you have ever felt, experienced, or hoped for, is sucked out of your soul, leaving you with no choice except to dwell on every bad thing that has ever happened to you...in the deepest pit of despair. 

I now understand it has got worse the older I get, because I have more experiences. So there’s more happy to be sucked away, and more pain to be left with. PMDD doesn’t just mess with your mind and soul, it likes to play with your body too. Any pre-existing conditions are highlighted and heightened...luckily for me, I have a back condition, so usually I am in considerable extra pain in the lead up to the bleed. I also get a barely-controllable eczema outbreak, and permanent, draining headaches. Then there’s being so tired, that I’m not sure if I’ve been to sleep. And I’m pretty positive that the world tricks me by deciding to speak a different language to me...because I haven’t got a clue how to distinguish between words, let alone decipher what they are saying. It’s all very confusing, and delays cause you to feel very silly; therefore, it’s better not to talk to anyone.

Ah...but wait! Why would anyone want to talk to you anyway? You are nothing, and nobody. Your past experiences have shown you that, right? There’s no hope for you, so stay put and don’t move, because nobody wants you. Your children can’t stand you, you’re so irritable, and their noise hurts your oversensitive ears. They also want you to come out of your dark, safe hole - they want food, they want to talk to you, but they are far too loud for you, and they would be better off without you...right? You’re lucky your back is screwed, and your muscles are aching in every area, because then you can’t drag your unwanted, pathetic self into the road for some juggernaut to put the world out of its misery, fed up of having to have your unworthy ass live in it....no one could possibly want you around, and you should probably top yourself to do them a favour. Everyone you know would have a greater life without you in it. 

The disillusionment of the world eats you up, the unfairness of “the system” has you physically aching for the world to end. You dislike your family, you don’t want to talk to your friends...and there is nothing but pain and despair.

And then one day, I wake up and something feels different. I have a harsh stomach cramp, but that’s nothing compared to the aches and pains of the previous week. I smile at my text messages, and I kiss my husband - it feels nice. Everything feels nice, and everything looks nice. I go to wake my children up with the biggest hugs and talk about upcoming plans for fun things. Oh wow, I also need sex. Like NOW. I want sex ALL the time (see, there is an up side to imbalanced hormones!) my mind and body are depraved instead of in pain. It feels good. And I wake up the next day feeling the same...and so on. I have a wonderful two weeks of coping with everything and having big smiles, and then something happens that will either irritate the crap out of me, or a loud noise hurts my ears, or I wake up and can’t move because of back pain...so I check the calendar - shit, it’s Agatha time. 

I gave the person I become a name, so I can fight myself, tell myself ‘it’s just Agatha, she’ll go soon, just hold on’. This is my most recent tool for the battle - after exhausting diets, exercise, herbal treatments, vitamins, finally giving in to my Doctor and attempting anti-depressants. Nothing works. So it’s me against her.

She’s getting stronger, and I can feel her on her way. I’m not ready, I’m still not over last month’s visit. I want to keep smiling...but no, time to batten down the hatches, because she will be here by the weekend; I will be forced to face every demon I have ever encountered, and I’m scared.

Can’t give up though, I have to keep fighting. I can now differentiate between who I am, and what is caused by her. It’s me against her....

.....c’mon then bitch.

PMDD: Suddenly it All Makes Sense

Now I know why!

I know why two weeks out of every month I am waiting to feel like myself again. I know why for two weeks I suddenly don’t give a crap about anything I was excited or cared about in the weeks before. I know why I feel contempt for everyone and everything when I recently felt so in love with it all. I know why I suddenly doubt my abilities and talents. I know why I isolate myself on certain days…when I just know I’m not going to be able to accomplish the simplest of tasks without getting irritated or downright angry. I know why I am afraid to schedule anything in advance, lest whatever I have to do falls on a day when I am incapable of behaving reasonably. I know why hateful thoughts become so insistent and pervasive despite the fact that just two weeks ago, I was 100% certain I had finally transcended them all. I know why I can’t stand to be touched, when just last week, I couldn’t get or give enough hugs. I know why I suddenly feel so disconnected from my friends, doubt their friendships, and suddenly want to walk out on my husband.

In my quest to understand, I’ve been given plenty of opinions. I’ve heard some labels, and some I even tried to make fit. But in the end, I knew they didn’t. I knew I wasn’t “bipolar”. I knew I wasn’t “borderline” or “mood disordered” (even though that’s still the involuntary category in which I’m pegged). I knew I wasn’t “just imagining things” either. Nor was it the whole story that I was “just hormonal”. Something inside me had changed in the last couple of years and something was happening throughout my menstrual cycle to make me feel like two completely different people. Only recently, it had gotten much worse.

The Fighting Bell Rings

In one corner: a woman full of radiance and quick to smile. She can be so full of love inside herself to the point of bursting. She is centered and enthusiastic, bright and cheerful, optimistic and strong. She’s not perfect, of course, but she’s so okay with that. She’s on top of her thoughts and more than willing to be alive. She is excited about projects and new ventures…even if they are challenging. Anything seems possible…anything reasonable, that is. (She isn’t about to jump off a building or into traffic.) She believes in an abundant universe and that she has something to offer the world. She enjoys the company of others and lives to laugh, create, and feel gratitude. She would never dream of hurting herself or anyone else. She may have bad days, but she recovers quickly.

In the opposite corner: a bedraggled, wild-haired psycho who has to apply every ounce of her will to not lash out…though she eventually does, usually by imploding on herself or exploding at those closest to her. She is the wily animal who shudders at her own hateful attitude as she mourns the loss of her other self. She is the one who simply CAN’T control anything. She is full of shame for her inability to control herself. After all, hasn’t she learned anything? She cannot forgive or forget. Everything is the end of the world. She stomps to feel she exists, yet the very force of her enraged feelings lifts her off the ground. There is no justice, no joy, no purpose, and no comfort to give or receive. All is bullshit. She isolates to protect herself and others from this “thing” that has overtaken her, but life pokes and prods all the same.

Eckhart Tolle, author of The Power of Now, talks about the pain body in his work which comes close to matching the insane being that shows up in my mirror every month. There’s also this idea in spiritual circles about embracing and integrating the shadow-self. I wholeheartedly agree with the importance of doing that. It’s powerful stuff, but I don’t think it is the whole story for me. Always favoring the holistic over the quick fix, I’ve been exposed to a lot of different teachings in my quest for well-being. But none of them have satisfied this itch under my skin that what I was dealing with wasn’t just some egoist resistance on my part, wasn’t just some weakness in my character, lack of awareness in my being, or deep wounding from childhood . In fact, I have LOADS of awareness and more strength than a lot of people. So, something wasn’t jiving.

Something else is going on. Whatever it is, this pain body feels universal…not personal…yet it attacks in a personal way for sure. It isn’t a permanent state of being but it is one that, when I’m in it, feels like the only state of being I will ever know. Sometimes, it turns on a dime…a cruel word, a task gone wrong, a frustration or irritation that sends ever-widening ripples of tension out into my environment…but, and here’s the key, only at certain times within my cycle.

What I’ve discovered is the term PMDD or Premenstrual Dysphoric Disorder. Though I don’t agree with a lot of the psychological/medical establishment bullshit (excuse my language…but let’s call it what it is) behind it, it has come closer than anything else I’ve ever encountered to explain what’s been happening increasingly so with me since going through a period of intense and prolonged stress.

I feel like I have to start by saying that I’m not interested in excuses for bad behavior. I’m not looking for a convenient explanation for bouts of anger or anxiety or anything else. I’m not trying to protect my identity as a “got my act together--no problems here” person, nor am I holding my shadow aspects in a closet of denial. I’m not interested in using the label of PMDD to explain away or justify crazy-making, just as I’ve never been interested in the label of “depression” to explain away unexamined pain and the absolutely natural waves of ups and downs that society would rather call a disease than a sign of being human in the world in which we live. What interests me about PMDD is that elements of it actually fit and explains myself to myself.  What fascinates me is that there are other women who feel like I do…that it is a real phenomenon to be examined and explored. It is a real phenomenon to be healed.

I’ve joined a couple of online PMDD groups, and what I’m noticing is that a lot of women feel they have no choice but to treat PMDD with very toxic antidepressants and hormone-related treatments that further disturb the delicate balance of the body. Some even decide to remove a part of their bodies, having hysterectomies, and are overjoyed with the results. I know many women get absolutely ill with vomiting. Why is the newly established “disorder” which was recognized in 2013 seem to be increasingly prevalent? I have my own theories circling around my head…the poisoning of our food supply perhaps or our increasing exposure to radiation and toxins. Who knows?

For me, it is mostly a mood challenge though I also get headaches, stomach aches, sleep disturbance, and other physical manifestations. Nothing like vomiting, thankfully. I feel incredibly blessed by and grateful for the management tools I’ve found that are side-effect free and have a great deal of sympathy for those who are buying into the system of big pharma (whose sole interest is to get everyone on their drugs regardless of whether it actually helps or even does more harm than good) and a patriarchal medical system (with a track-record of locking women away for their complaints). We can be products of the system that would call us “mentally disordered” offering us only what they deem as the answer or we can access inner qualities we can cultivate to cope and turn to more natural therapies until we discover what combination works for us. I know what my choice will always be. And that means that sometimes, I choose to live with a very difficult, very challenging state of being with very little outside assistance at my disposal. So be it.

Not just regarding treatment, PMDD is a hot topic of debate. In addition to being controversial in the medical community, there is, as with all conditions, a lot of general ignorance around PMDD. As I mentioned, it’s only been acknowledged since 2013. Right away, people assume it is PMS with a different name or an excuse for why a woman suddenly gets bitchy, tired or crampy. Or they draw other ill-informed conclusions. One woman made the mistake of sharing her condition with her employer to be told they feared she posed a threat to either herself or coworkers at work. I suspect there are people in their employ at far greater risk of flying off the handle, the ones they’d least suspect. Others are told, even by well-meaning friends, that it is all in the head and are told to chill out or get over it or try some quick fix. Clearly, those who don’t experience it are not in a position to offer advice!

Here’s the thing about PMDD. We may think about bludgeoning judgmental, self-righteous ignoramuses who think they know all the answers, but we tend not to act on it. Good thing, because there are plenty of them around.

Just as I have been (unprofessionally) mislabeled before discovering what is known as PMDD, I am sure there are women ascribing their behavior to PMDD when it truly belongs in another camp altogether. Supposedly, 40% of women who seek treatment for PMDD may have either what is known as PME (premenstrual exacerbation) or even an underlying mood disorder such as bipolar. It’s complicated. Of course, the professionals will continue to debate if any of this is real or not, some kind of anti-female rhetoric or not, or whether it is a mental disorder or not. This just muddies the waters, but what’s to be done? Human beings are intricate and unknowable and this “dis-ease” is extremely complicated because there are so many variables! In the meantime, there are those of us who live the spectrum. There are those of us who know.

Speaking of the spectrum…

There is PMS, the catchall that pertains to the mild, acute fluctuations of mood, irritability, fatigue, appetite changes, and cramping that affect 30 to 80% of menstruating women. It may be uncomfortable, but it is not generally debilitating.

There is PME. This is when a condition from which a woman suffers, such as asthma or an eating disorder, is worsened during PMS. So, PMS disappears after one’s period whereas PME symptoms merely improve.

Now there is PMDD which affects 3-9% of menstruating women. (With a female population of over 3 billion on the planet, 3-9% of those with periods is no small number!) With PMDD, the symptoms associated with PMS become debilitating and can include: depression or hopelessness, anxiousness, irritability, low energy, lack of interest, sleep and focus disturbance, loss of control and feelings of overwhelm, and suicidal thoughts. These symptoms tend to intensify as a woman nears her period and finally begin to abate a few days into her period. Women with PMDD generally feel themselves again for 7 – 10 days after their menses before entering the cycle again.

I’m not crazy about another label…another diagnosis…especially one categorized as a depressive disorder which, to me, shows very little understanding of the scope of symptoms different women have. I’m not crazy about listening to “experts” tell me about myself and never have been. What I am interested in is knowing my own truth for myself, suffering less, finding ways to cope and relate, and living as fully as I can. And I want to help other women reeling with this monthly curse and feeling that they are robbed of half of their lives to do the same.

Do I believe in PMDD? Not as boxed-in psychological babble and checklists, certainly. I’ll never see a doctor for it myself. But it is a condition with which I resonate with unquestionable certainty. I’ve charted my cycles. I know when “the shift” is about to occur. I know when it is over. I know it is linked to my cycle. I know the changes I feel are described by other women who think they have PMDD, too. I know the challenges such changes bring and the impact they have on my life. I know my perspective goes out the window. I know some months are worse than others. And I totally relate to the increasing amplification of symptoms as I near my period and that feeling of complete and utter relief when suddenly the sun is shining again a day into it.

Maybe we need another word for it…one not bound up with so much baloney…one immune to the twisted machinations of men who hate women and women who hate themselves. I don’t know. Here’s what I do know: this is my experience. Maybe it won’t be mine in two years. Maybe it wasn’t mine two year ago. But it is mine now. Bravely facing that self and being open about it with others going through the same experience is crucial. There is power in numbers, and we’ll learn more by exploring this together. If nothing else, maybe the diagnosis of PMDD will simply prove to be a means for women to talk about what being alive as a women today is like for them. That itself is a relief.

Liana's note:  The above guest post was written by the blogger Cheekyminx. With her permission, several of her posts about PMDD are featured on this blog. In the meantime, to find out more about her work as a PMDD Advocate, please visit her Facebook page, PMDD Life Support. 

An Open Letter to Partners of Women with PMDD

Today I'm honored to host a guest post by Chef Jay, who has decided to help raise PMDD awareness by starting a blog for men about PMDD.  You can find his original post, and others, here. 

Dearest Partners of Women with PMDD,

First of all, let me be clear. This letter does not come with answers or solutions. This is not a "be all & end all" to the chaos of PMDD. Every situation for every woman is different. Ergo (a word not used often enough), no household is the same. After many conversations and emails with men and women around the world, I've realized a few common traits, however. There are similar feelings, circumstances, emotions, issues and experiences...this letter addresses and recognizes them. This note recognizes the real, true emotions and thoughts emanating from the souls of men (and women) coping with a partner with PMDD. This is not a happy letter to make everyone feel better...it's one that draws attention to the mindset reality of living with PMDD. This isn't about me. It's about all of us.

I know you.

You're tired. Exhausted. You feel drained of all energy - emotional, physical, spiritual. Perhaps you feel absolutely nothing at all. You're like a zombie, going through the motions every day. But you're used to it...it's who you've become. You don't like it - you wish you had more energy and lust for life - but you give yourself a daily pep talk to survive the day, praying that today might be better...and you're not even the one with PMDD.

You are constantly on edge. You never know when her hurricane will hit. Predicting how one day to the next will transpire is fruitless. Hour to hour, day to day...hell, even minute to minute, is a pointless exercise. You see her, you love her, you feel for her but you wonder, "What else can I do?" - you've already tried everything!

You've thought about divorce. You've thought about having an affair. You've questioned your life choices...and those thoughts scare the hell out of you. So why do you stay? Why do you remain committed in a relationship that causes you stress and, most likely, shaves years off your life? Perhaps it's because of the words, "...in sickness and health...'til death do us part..." or maybe you're a glutton for punishment or feel, deep down, you can fix her or save her. Possibly, you fear what she'd do if you left. If you have kids, my guess is, you're there for them, more than her.

You've probably heard from her, more times than can count, that she "needs to do (this) or (that) because it might help" - this may include taking a course, going for a run, spending a day or two at the spa, getting massages, nights out with her girlfriends, binge watching Sex & the City or Supernatural, spending a few days here and there away from you (and the kids)...but can you do the same? No. Can you just take off for a few hours and have the day just for you? Probably not. Deep down, you wonder, could she handle the kids for 3 days without me? Your/my gut says no. The time you have out of the house is, most likely, spent getting groceries and doing things that need to be done to make the house and your life a little better.

You don't get enough downtime and, when you do have the opportunity to sit back and chill, your mind's still racing. Most likely, you just want to watch something pointless or mindless, have a beer and fall asleep. The thought of watching a show that has deep thoughts, intellectual content or educational information further stresses you out because your mind can't relax...there's no shut off switch to settle your brain.

You probably don't hear "Thank you" or "I love you" nearly often enough...and, as for, physical expressions of love? Not so much. (Or, at least, not like it used to be). But when SHE wants it, you must provide! Perhaps sex - or any form of intimacy - feels like a chore...another task to complete. Or perhaps, when it finally happens - a moment together, both of you in a positive, awake state of mind - it's a relief...an opportunity to forget about the trials of tribulations of the past few days.

You say words but may not mean them...or they don't have the same feeling behind them like they used to: "I love you" - perhaps it's said so she can hear the words but, your feeling behind them is different. "It'll be okay" - knowing, deep down, it'll get better for her but not for you. Her diatribes, constant needs, argumentative statements, vitriolic, mean words...you'll remember them and hold onto them and think of them all too often. You'll start to believe them - or, at minimum, question who you are based on her hurtful words. You say, "I'm here for you" but, perhaps deep down, you wish at that moment, you weren't. "

You question everything & constantly overthink. When you're sitting on the porch with her, having your coffee or glass of wine, and you hear her sigh heavily, you wonder if that's a sign of impending doom - something dark on her mind, or a coping mechanism to calm herself...or maybe she's just relaxing for the first time in awhile. In any case, you don't ask because "is everything okay?" or "what're you thinking?" or "something wrong?" might set off a chain of events you don't want to deal with.

You constantly look for ways to control your environment - from the way you schedule your day to what you cook for supper or how you organize things around the house. More often than not, when she's in her state, decisions are a further stress and amplify her anxiety. What do you do? You make all the decisions, thinking that'll make life easier for her. Yet, unfortunately, it doesn't often work out that way. Perhaps it's her response of "you should've asked/told me" or "why didn't you let me know?" or "if you loved me you'd have..." Friends may say, "Damned if you do, damned if you don't" but, to you, it had to be done. Survival instinct kicks in and you do what you need to do.

On the good days, when she's positive, upbeat, full of energy, revitalized, you struggle to enjoy the moment...you don't know how long it'll last...you fear the bubble popping...you're still on edge and, most likely, get down on yourself for not being fully present with her. Even when you know you SHOULD be enjoying yourself, you can't.

You're not fully present on a good day. You're not fully present when you're supposed to be having fun or enjoying life. But you ARE fully present when you're surrounded by her chaos, negativity, anger, frustration and darkness. Think about that for a moment:

You're only fully alive when you're being torn down, when your life force is being given to someone else, when every moment of your day is spent making sure your partner (and your household) lives to see another day.

You probably mutter or mumble under your breath as you walk away from her...things you wish you could say out loud but, knowing the damage they'd do to both of you, respecting her mental state, you keep it to yourself, tucking it deep inside where the feelings fester and ferment. Maybe those words of resentment will go away...or, maybe they've established a symbiotic relationship with your soul. These periods of resentment...they grow in number as the years go on...your thought process dips its toes into the murky waters of ire more frequently and easily.

You're constantly seeking an outlet for your tension. Nothing seems to work. Perhaps you go to the gym but, for some reason, you cut your workout short because you're worried about her...or you're too stressed to even relax to workout fully. Or, maybe, you go for a pint with your mates but, you're not fully present...your mind is elsewhere, wondering if she's okay. And you cut your night short because you know you need your energy to deal with the next day.

You feel guilty when you do something for you. Whether a ball game or buying something online, you wonder how she'll react or what she'll think or if she'll resent your 'selfish' ways. So you begin doing less and less for yourself, channeling your energy into your family and her.

If you have kids, you wonder what they'll remember about life in the house, growing up. Will they remember how Mommy hardly slept in the same bed as Daddy? Will they remember how Daddy would always wake them up in the morning, get them dressed, make them breakfast, pack their lunches, cook supper, clean the kitchen, do the laundry, get the groceries? Or will they remember that Daddy didn't have enough time to play with them because of everything he did to make the house function?

You cry. Sometimes there are tears streaming down your face or sometimes you're crying on the inside. But, regardless, you're sad. You're upset - at yourself, at her, at a higher power, at anyone, at no one - yet you keep it to yourself. It's your burden. Perhaps you feel like you asked for this. Perhaps you believe this is your own private challenge. Know you're not alone. There are people out there to help. People are there for you. They want to help...they're waiting at your doorstep...it's up to you to let them in.

This letter is part vent, part affirmation. Maybe you've had some (or all) of these thoughts. Maybe you can't relate at all. In any case, you aren't alone. Like a phoenix rising from the ashes, strength builds from pain. For whatever your reasons, your resolve to remain committed to someone struggling with the very fabric of being, is powerful. While my words may not be enough, you are a great person, standing beside someone who needs you more than words. You may not hear it enough or feel it or even believe it but your presence is an amazing gift - not only to her but to the universe. You make her world - and the world around you - a better place.

PMDD Awareness Month Ends, But the Struggle Continues

Today wraps up the end of PMDD Awareness Month.  I've spent the month sharing on Facebook and Twitter several posts from my Voices of PMDD series, where women with PMDD and their partners have shared their stories.  The quotes that follow come from Hormone Hell, the personal journey blog of a fellow PMDD Advocate, Jarrah, who asked her readers to describe what PMDD feels like to them.  I've chosen several responses that I fear we can all relate to in some way.  Please read on, and, if nothing else, know that you are far from alone in your struggles with the demon that is PMDD.  Perhaps one or more of these descriptions will help you to put into words for a loved one what it's like for you, each and every month, and raise awareness in your own way.

On my bad days it feels like my nerves are on the outside, that everything hurts, and there’s a heavy blanket on me that I can’t get out from.

It feels like nails in my brain that prevent me from thinking correctly. The nails stay in my skull for about 2 weeks and then they finally go away and I can think again.

Your brain feels like mush, your memory is poor. You're actually scared that one day you’re going to wake up and forget who you are. Your digestive system is going crazy, you’re constipated one minute, rushing to the toilet the next. Your bladder needs to empty itself 6 times in a single hour. You're hot, no you’re cold, umm, you’re hot again. You love your husband one minute and consider filing for divorce the next. If one more person chews, breathes or coughs, there will be bloodshed.

I’m angry, I’m sad, I’m laughing…now I’m crying. My joints ache. I am only 29 but I feel 99. My hair is thinning; it’s so dry it feels like straw. I have permanent dark circles under my eyes. My skin is so dry it’s flaking.

You’re so tired but no matter how much sleep you get, you still wake feeling tired. You’re hungry one minute, you’re nauseous the next. You can’t breathe; your heart races and you can’t stop sweating. You don’t want to be touched, you feel suffocated if someone sits close to you.

Overthinking is an everyday occurrence and often your head is swimming with thoughts that leave you feeling terribly anxious. You no longer look forward to anything, as each day is just a matter of survival. You have no passion and no longer think about the future. You hate this empty person you have become.

You start daydreaming about dying. Deep down, you know there’s a part of you that definitely does not want to die. You know that, logically, things are fine and you will be okay. But you can’t FEEL that. All you feel is despair, hopelessness, and a suddenly strong urge to leave this world.

Worthless. Empty. Angry. Bloated. Exhausted. Sometimes I just wish I could disappear…just lay down in the grass and get absorbed in to the earth somehow. Oh yeah, and Crazy. I know what I feel isn’t normal, but I can’t change it…at least until my period comes and then I’m right as rain.

Anticipation for hell week becomes a hell week in itself. I can’t control the choking wave of anxiety or the rage of this demon but I have changed my outlook. It will not own me.  I will not let it drown me.  I will swim and swim until I come up for air. Until the next storm. There have been a few hell weeks where no matter how hard I swam I could not escape the urge to let it pull me under and take me in its entirety. Those days and those times I don’t know how anyone makes it out alive.  

Rage, anxiety, mind going crazy, all of those things attacking you all at once. You wish it was over and the sad thing is you have no control over it. You see yourself doing all these dumb things and you try and stop it but it’s so hard to control. But you keep fighting because you love your family and you love yourself too much to give up!

Like a tightness of the skull above the eyes, like my skin and hearing is super sensitive, so I have a headache and am easily overwhelmed. This coupled with lowered patience and attention span means I’m really short-tempered. Sometimes that results in a snappy comment and then unreasonable crying (e.g. about burnt pine nuts), but other times it’s disproportionate rage. Sometimes it’s just a brain fog, where I sit and stare at the work computer, trying to figure what I’m supposed to be doing, and how someone is paying me to sit and feel like my powers of logic and reason have been pulled out through my eye sockets.

It’s like a switch that is flicked inside me as soon as ovulation begins. From that point on I become the opposite of what I consider to be my “normal” self. I’m suddenly extremely anxious, paranoid, worried, irritable and I can snap at the smallest things. The rages are life-destroying. They hurt everyone I care for, and scare off anyone else. My period finally begins and within a day or two, my mood lifts. The anxiety goes away, the paranoia is no longer there. I can think rationally and logically. I have energy to do anything I want, and sadly most of that time is spent picking up the pieces of the storm that lives inside of me, and has--for now--disappeared.  

At the start depression starts to set in, aching body, foggy head, headaches, high anxiety, pains in the stomach, sweating, panic attacks when I go in public, hysterical crying, at my worst, thoughts of suicide. Then my period arrives...all those feelings and thoughts are gone just like that…I’m back, me again, I’m back to normal. I can go to work with ease (if I still have a job). I can go out anywhere with no panic attacks, anxiety (what anxiety?) I am fun, I enjoy being around people and they enjoy being around me. I wish I could be this person all the time, I hate knowing it is short lived and the devil lady will be back again soon.

Sensitivity to light and sound…my son talks and talks and I just want to curl in a ball to escape. That’s horrible to say…but I just can’t handle it.

I always wonder if this mental illness will kill me one day—I’m sure it will. The brightest days are good. I enjoy them. The darkest days however, seem like I won’t ever escape them. Each time it feels like maybe this could be it, the one that I don’t come back from. But somehow I make it through. PMDD is cruel. It’s like every month, sanity is dangled in front of me and I have to hold onto it. There’s a glimmer of hope that this month I’ll be cured, then suddenly it’s ripped away.

I was sitting in my seat watching a movie, my whole body was tense, I was clenching my teeth, my heart was racing, and I was swallowing back the nausea I felt…I tried to push all those feelings out of my head so I could try to enjoy the movie. As I sat there I couldn’t help but think…So this is what my life has come to? It’s a movie for goodness' sake and my body is acting like I need to be on alert just in case at any second someone might try and kill me.

I ended up going for a walk to try to clear my head. My legs would only carry me half way around the block, my whole body was so fatigued and I was so nauseous the symptoms reminded me of how I felt when I was in the first trimester of pregnancy.

PMDD….a war you’re constantly fighting that no one else can see.

PMDD - When Women Who Don't Have it Do Harm to Those Who Do

April is PMDD Awareness Month.  Last week, I presented a Quote of the Week from a psychiatrist in South Africa who does indeed understand what PMDD is about and the need to treat it.  This week we present the flip side of the coin--the side most of us are unfortunately all too familiar with--in the form of a guest post by fellow blogger Twilah, written in response to a TED Talk in which a woman psychologist proceeds to negate the validity of PMDD by, among other things, dismissing PMDD and its sister disorder PMS as a cultural myth.

Twilah: This TED talk came to my attention because it was posted on a PMDD forum online. Other women complained that the talk seemed invalidating and dismissive of the illness they live with. I tend to agree with the feedback of the women affected by PMDD. This is my analysis.

The speaker, Robyn Stein DeLuca, opens by gauging the audience’s familiarity with the concept of PMS. She establishes that PMS is a familiar concept with easily recognizable symptoms. She goes on to point out that mainstream American media accepts and propagates ideas and assumptions about PMS.

DeLuca then drops her bombshell that after five decades of research the jury is still out on PMS. It’s poorly defined, treatment protocols vary… it may not even be real! She explains how historically the symptoms of the disorder described by psychologists varied so greatly that the very definition of PMS became meaningless! 

She goes on to outline the shabby research techniques and protocols that characterized the presumably five decades of research she referred to earlier. She claims that the DSM “…in 1994…redefined PMS as PMDD, Premenstrual Dysphoric Disorder.”

Actually the DSM didn’t distinctly include PMDD until DSM 5, which was released in 2013. Prior to that, the DSM 4 included PMDD not as a distinct mental illness, but as a “depressive disorder not otherwise specified.” The speaker heralds the clarity established by the diagnostic guidelines offered in DSM 5. She then points out that under the new criteria in DSM 5 the number of women affected by PMDD turns out to be only 3-8%, which she considers “not even a lot of women.”

So DeLuca opens with a claim that five decades of research hasn’t supported the premise that PMS exists. Then she points out how poorly conducted much of that research was. 

Okay…you are using five decades of research that by your own reports doesn’t count for anything to support your premise that PMS is a dangerous and erroneous cultural creation? It’s generally a bad idea to use volumes of poorly conducted research as support for anything. And a mere 3-8% of presumably the world’s female population is affected? If women are slightly less than 50% of the estimated 7 billion humans on this planet, and about 2 billion of these women are menstruating, then 3% of menstruating women translates to roughly 60 million women with PMS/PMDD…whichever she is calling it right now…because she wants to undermine a PMDD diagnosis by conflating it with a cultural concept of PMS!  (Liana speaks up:  I want to say here that PMS and PMDD should never, ever be used interchangeably, as they are two separate conditions, and while PMDD affects 3-8% of menstruating women, PMS is said to affect approximately 80% of menstruating women. That means this woman, aside and apart from the huge disservice she is doing to women who do have PMDD, is also dismissing the monthly experiences of possibly another 1.6 billion women and calling it "good news".) 

Head spins…

She goes on to posit that, “the PMS myth” persists because of cultural limitations on the role of women.

Now I won’t argue for a minute that many cultures, especially the American one to which she is primarily referring, frequently limit the roles of women. Popular conceptions of PMS have been used by sexist people to minimize women’s speech and self-advocacy. That is undeniable. But the irrational interpretations of a sexist culture have zero bearing on whether a medical condition is real. Many well established medical conditions are stigmatized and used to oppress individuals affected by the conditions. Think of any disease that might cause a person to wear a colostomy bag, think leprosy, think any one of legions of mental illnesses. Simply because a culture uses a diagnosis to oppress a person with the diagnosis does not mean there is no validity to the diagnosis. The cultural interpretation of the illness needs to be addressed, the disease doesn’t need to be denied. 

DeLuca’s assertion that PMS is a largely Western concept is irrelevant also (Liana: as well as totally untrue). Lots of women’s health issues are more marginalized in non-Western societies. That has no bearing on their realness or validity. If society at large and physicians in particular choose not to discuss the high infant mortality rate in any country that doesn’t hold women in high regard, that doesn’t mean high infant mortality doesn’t exist in that country. That means it isn’t talked about or researched in that country.

To say that diagnosis and treatment of PMS or PMDD is anti-feminist is more hurtful to 60 million women than much run of the mill sexism. To have other women, who we would hope are our allies, take a stand to deny us diagnosis and treatment for a life threatening condition is morally reprehensible. 

Because that’s what PMDD is. It is a life threatening condition. The 3-8% of women who are affected by this disease experience job loss, relationship difficulties, relationship loss, depression, and potentially suicide. And this woman thinks it is helpful to stand up in a forum like a TED talk and tell people that it’s really no big deal that over 60 million human beings deal with this disease every month? To suggest it is a cultural problem and not a medical problem? She criticizes what she calls “the medicalization of women’s reproductive health.” I criticize the politicization of a medical disorder. I criticize speech that discourages further well conducted research into a life threatening illness.  (Liana:  Up to 30% of women with PMDD regularly experience suicidal ideation or attempt suicide.  15%  those succeed.) 

The root of the problem is not a cultural misperception about PMS. The root of the problem is that an endocrinological disorder is being treated as a mental illness. The problem is that the hormonal health of women is being handed to psychologists and psychiatrists for treatment. Imagine going to a psychiatrist for your diabetes or your hypothyroidism. What do you think the outcome would be? What do you think the data would show? Imagine a man being told to go to therapy instead of being given testosterone supplementation for age related testosterone production changes.  (Liana:  I half agree, but also disagree.  If psychiatrists and psychologists are the only medical professionals attempting to take PMDD on, then I would gladly go to them over accepting no medical help at all.  But I do believe PMDD is more an endocrinological disorder than a mental one.)

DeLuca says that, “…the success of medication in treating PMS symptoms vary from woman to woman.” She uses that as evidence to support the invalidity of a PMS diagnosis. Of course the success rate of using psychiatric drugs to treat a hormonal disorder would have varying rates of success! Considering the efficacy of antidepressants to treat depression is disputed, with estimates ranging all over the place, it’s not surprise the efficacy is unpredictable when you prescribe a psychiatric drug for an endocrine condition. I’m sure you’d find the same kind of inconsistency if you prescribed Prozac for erectile dysfunction. A man just might get an erection because increased serotonin made him happier overall. (Liana:  If the medication doesn't work, that does not mean the condition is not real.  It means the medical options provided are not addressing the medical issue.)

But wait, we’re talking about women.

This presentation is so off base. The problem isn’t that a make believe, culturally based illness is being given credence. The problem is that a hormonally based illness is being investigated by mental health professionals, simply because one aspect of its presentation is similar to recognized mental illnesses. The problem that American society uses the term PMS to dismiss or demean women’s emotional states is a completely separate issue from research and treatment of a disease that may affect more than 60 million women. The problem is that an educated women would stand up in front of an audience of thousands and undermine the health concerns of millions of fellow women.

Let’s not back away from helping women because existing research is incomplete or inconclusive. Let’s fund more and better studies. Let’s take seriously the complaints of millions of women that their health is being affected by their hormones. Let’s listen to women’s voices instead of dismissing them. 

Twilah's blog can be found here.  

PMDD Quote of the Week - A Doctor's View

April is PMDD Awareness month.  I can't begin to imagine how much further we would be along the path to health and healing if we only had more doctors like this.  This woman "gets" it.

What is PMDD?

"A reproductive disorder whereby women experience transient physical and emotional changes around the time of their period, PMDD is associated with a level of impairment that is similar to major depressive disorder and poorer quality of life compared with community norms, therefore it should be considered a serious health condition. PMDD can have adverse consequences on a woman's social functioning, relationships, work productivity and healthcare use..."

and

"Treatment generally continues for duration of a woman's reproductive life.  If one considers that a female typically menstruates 300 - 500 times during her lifetime, timely identification and initiation of appropriate treatment may prevent impairment.  This, together with support and TLC from loved ones or spouses, can go a long way in improving the quality of life of PMDD sufferers."

~Dr. Eileen Thomas, a specialist psychiatrist at Akeso Clinic, Milnerton (Cape Town, South Africa)

To read the full article, go here.

As Dr. Thomas so rightfully points out, a female can experience up to 500 menstrual cycles during her lifetime. I also mention this in my books, PMDD and Relationships, and PMDD:  A Handbook for Partners.  Below are a couple of sample excerpts:

Let’s do the math. The average age of female puberty is 12; the average age of menopause is 51. Round that off to 40 years of menstruation. Multiply that by 12; that gives you 480 months of periods if you never have children, less if you do. Let’s go with 450 periods for now. That gives you 900 weeks of pre-menstrual issues. Divide that by 52 weeks per year, and you get 17+ years that a woman can spend in the living hell that is PMDD.

Seventeen years, people!

and 

Seventeen years is a long time to feel and/or be out of control. Seventeen years is also a long time to be on medication, especially medication that studies now show doesn’t work more than half the time.

Listen, nobody knows for sure what causes PMDD. All scientists know is it is a biological event that manifests as emotional symptoms. What does that mean? It means PMDD is caused by something that happens in your body and shows/expresses itself in your moods. The closest science has come to defining what happens is that whatever happens, happens in concert with your menstrual cycle, and involves your hormones. The hormones they have looked at the most are estrogen, progesterone, and now a metabolite of progesterone, called allopregnanolone.

Some schools of thought are convinced it has something to do with the levels of these hormones in your body, and whether they are in the right balance or not. But you can’t detect PMDD with a blood test, and every estrogen/progesterone blood test I have taken has shown my levels to be perfectly normal, even when I was in the middle of a PMDD episode.

I think the best science has come up with so far is that yes, PMDD does have to do with your hormonal fluctuations, but it’s more that something goes awry in your brain when processing these normal and natural hormonal fluctuations in your body.

That’s right. Something goes wrong in your brain.

No news to us, right? We’ve known all along something wasn’t right with our brains, with our thinking processes, during an episode of PMDD. Why else would we say and do the things we say and do during an episode, but not during the rest of the month?

As part of PMDD Awareness month, I invite you to share in the comments section below any adverse consequences YOU have experienced in your social functioning, relationships, work productivity and/or healthcare use due to your PMDD.  Share to help make aware!