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 - Don't Wait Until It's Too Late

Day 100. 100 days since I have had my menstrual period. I’m 54 years old and finally heading into menopause. After a lifetime suffering from PMDD you would think this gives me joy, but all I taste are the ashes of my family, my ambitions, and myself. For decades PMDD has taken a monthly flamethrower to them all, and now I can only sift through the embers and mourn.

This disease has done terrible damage to everything that I wanted to be, and the person that I thought I was. Even though my husband understood the illness, my monthly insanity finally broke him and he was in the final stages of leaving me a year ago when leukaemia struck. Now we live together but separate, as I help him through the long dangerous recovery. We get on well enough but the loving intimacy is gone. He can’t tolerate me touching him, even as a comfort. Too late. Too late.

My grown sons love me but despise my behaviour. I’m sure I have ruined trust in women for the youngest one.

I work hard and am mostly appreciated at the office but it’s clear that my regular loss of emotional control has permanently stalled any career advancement.

I was a bright and positive young woman who truly believed I had a shiny place to make for myself and my family in this world, but this disease has made me betray the little girl that I was, the one who believed she was good and would do good things.

So I urge every one of you to fight, fight harder than I did, look for answers and for care that actually works for you whether it’s SSRIs, birth control, supplements, cannabis, diet, exercise, or therapy. Don’t get complacent. Don’t give up. Don’t assume your family can put up with this forever. Don’t wait until it’s too late. Too late is closer than you think.

~Anonymous

PMDD Symptom Play by Play Number 1

The following guest post was written by the blogger Cheekyminx. With her permission, several of her posts about PMDD are being featured on this blog. To find out more about her work as a PMDD Advocate, please visit her Facebook page, PMDD Life Support.

Talking and writing openly about Premenstrual Dysphoric Disorder is something I'm compelled to do, both for myself, other women, and the people who love us. I'm trying to understand myself and this very complicated phenomenon that seems to slip and shift into unrecognizable forms within a recognizable framework every month. Since learning about PMDD, I am now free to witness the cyclical changes taking place in my body and mind with some objectivity. As my body becomes more and more sensitive to the hormones surging through it, I'm less fearful about why I'm suddenly losing control, wondering how much worse it will get. It's easier to pay attention to the process, fascinated and taking notes.

Truly, as hard as it is to understand, things can be very different month to month. What I've done here is journal some of my symptoms in the days leading up to one period a few months ago. Were I to do this monthly, no doubt the expression of symptoms could be different each time. Typically, women begin to experience symptoms 14 to 11 days out from menstruation. The actual period tends to bring relief either instantly or within a couple of days. But again, this is only generally speaking. What I have garnered on the forums and from my own experience is there are exceptions to this rule, and a woman should not rule out PMDD just because she doesn't fit some erroneous profile that was originally established on a very small base of women. And if, like me, your hormones are in flux anyway due to perimenopause, you might indeed be a bit all over the symptom map!

With 11 days to go...The first thing I notice is an almost instant loss of my sense of humor. It was there one second, gone the next. My husband noticed it since we had been laughing for days prior. It isn't that things have ceased being humorous so much as that I have stopped being able to find humor in them. Even my face feels like it has forgotten how to move upward into a smile. The next thing I finally notice is growing fatigue. In fact, I'd slept 12 hours for two nights in three days. This is an absurdly long amount for me to sleep. I didn't even wake to relieve my bladder which is a common occurrence during a night of much less sleep. I gave into this need for sleep instead of fighting it off, and I think it did me a world of good. I also notice my body feeling colder. I wear a sweater and my hands ache with cold even though the temperature isn't that different from weeks prior. Then there's the hunger. I'd probably be eating all day long if I could. The menu? Salty chips, roasted nuts, dark chocolate, and butter on all manner of cakey-bready things. Unfortunately, the baker where we used to get our organic sourdough stopped taking orders, so I'm left with unfulfilled pangs and cravings for hot buttered toast or French toast. When it comes to food, I know I can't give into every craving anyway. I'd be the size of a buffalo. So, I balance things as best I can eating oat crackers and high-quality chocolate along with the grapefruit and parsley juice and salad and fruit. For the weeks leading up to this time, I was making banana shakes using almond milk, including the spices turmeric, cardamom, and cinnamon...each known to alleviate various PMDD symptoms like depression. I've also started taking magnesium which is supposed to help with symptoms. We'll see if I notice anything.

With 6 or 7 days to go...I felt like I was doing better this time around contrasted with last month. Is it the spices? The magnesium? Luck? I've noticed that, generally, I have good months and bad months. This makes the whole concept of PMDD even harder to understand and, for some, to believe. And yet, other women express the same experience. Some say every third period is the worst. I seem to have three on, three off...way off. Will this be a good month? Weepiness has set in and my legs are starting to feel like two leaden logs, so maybe it is too soon to tell. (Note from Liana: this good month/bad month pattern has been explained by whether or not the woman is ovulating.  If  you ovulate, you will experience PMDD symptoms.  As we enter perimenopause, we have fewer and fewer ovulations.  No ovulation = no symptoms.)

5 days and my mind is off and racing. I can't stop over-analyzing, over-thinking, and over-compensating. Some who know me might say I'm always like that. Okay, so, imagine that ramped up by 10. I've become afraid of the world, and what were merely challenges have become insurmountable obstacles. My husband is doing his best to distract me and also to listen to me without himself becoming depressed and defeated. Somehow, I've managed to regain my sense of humor, and this is really saving the day. Squirrel! 

4-2 days: Could I actually get through this month without losing it completely? I've had three social obligations in the last three days, and though as an introvert I'm feeling the drain, it isn't debilitating. The fact that I could even be social just a few days before my period is somewhat of a miracle.

1 day to go and everything I thought I'd managed to escape this cycle has come down full-force. The internal pressure I feel...how to describe it...has increased dramatically, making me very antsy...agitated. I feel like a combustible material. Pour the wrong remark over me and I will blow up.

So what happened next? I was attempting to control an out-of-hand ant problem (yes, ironic...me being antsy and all). My husband was pressuring me to leave for grocery shopping because the stores would close soon. He wasn't helping or taking part in what I saw as a near-disaster. Yes, I realize ants are not a near-disaster, but PMDD magnifies everything by about 1000. Couldn't he see what I was dealing with? I became furious.

So my husband asks, "Why are you acting like an asshole?"

Wrong move. That was it. The end of marital bliss. I may well have been an asshole, but I didn't need anyone pointing it out to me, thank you very much. I tore the shopping list in two, gave him his half and wished him luck. Despite wanting to call a truce in the market, I couldn't bring myself to do it because of the way he was now behaving...like an asshole.

The thing is, if I act like a big-enough asshole, then eventually, so does my husband. And then, we're lost. We're lost for an hour, a day, a week...hard to tell. But I know I can't engage with him AT ALL if he's also going to be a two-year old. And then I hate him because he doesn't have a "hormotional" excuse and could be making all this so much easier for us both.  (emphasis added)

Why couldn't he just have grabbed me, hugged me, and told me the ants were a little problem and that if I could just walk away I would feel better? Herein lies the greatest PMDD difficulty for me and countless others. Our behavior becomes exceedingly difficult if not impossible to control. (Liana adds: and once we have reached that tipping point, we are literally unable to go back, to retreat, to regain control.  All our efforts to soften our PMDD symptoms (meditation, herbs, vitamins, exercise, rest, nutrition, mantras, art or music therapy) are done in an effort to not reach that tipping point.  Because once we have, all is lost for that day or that PMDD episode. This is what most people do not understand.  We can't stop, once the emotional cascade begins.)

We're not doing it to be difficult. We're not doing it because we like throwing tantrums. We don't even get any pleasure out of it. Well, maybe some do. I don't. Mostly, I see a madwoman taking over my body and wonder how on earth to reach her, calm her, and love her. It is no easier for our significant others who try desperately to understand us as we're suddenly shooting daggers at them when five minutes ago they could do no wrong.

My husband and I talk about this stuff when we can. When I'm back to my old self again and after he's recovered, we talk about this funny thing called PMDD. We strategize and decide we can handle it. We make-up and go about our lives...laughing, loving, sometimes bugging each other, but getting over it. But then, when it rolls around again, it seems neither one of us remembers what to do. It's a common amnesia.

When I can, I will do another symptom play by play post. In the meantime, have you noticed similar symptoms in your own or a loved one's life?

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. 

PMDD Quote to Reflect On

From a participant in the Facebook groups...

~I came to the realization that PMDD is as much of a spectrum disorder as autism is. Everything is different for each of us, severity so different, that there is no real way to pin it down. Maybe that's why treatment is so elusive. We are trying to classify it to fit in a single box, and it simply can't. In other diseases there are finite ways to tackle it. That is just not so with any spectrum disorder.~ 

Pre Menstrual Euphoric Disorder - Have You Experienced It?

A reader asks:  Something I've never understood is my own menstrual symptoms, which I've never seen discussed anywhere.  I get the complete opposite of you.  Instead of PMDD, I get Premenstrual Euphoric D.  For three or four days before bleeding starts, I get s surge of energy, both creative and physical, and my sex drive goes through the roof.  Later, when my period starts, I get quite severe backache and cramps.  This, I assume, is another type of PMS.

I have other atypical reactions, too.  If I get too aroused while standing, I fall over.  I can't be the only woman who experiences this, but I've never heard it described.  Seems to me that we need a lot more research in this area. PMS isn't just cultural.  It's physical, but I suspect it's far broader and more complex than people realize.

If you come across an explanation for my PMED, I'd be very grateful to find out.

Readers:  Can we help a sister out?  Please share any similar experiences (or any links to relevant material) you may have in the comments section, or write to me privately here.  Thank you!

PMDD Quote of the Week

~I hate that none of my friends and family really know the demons I battle every month and that all my hard work during my good days barely seems to count because of my bad ones.~

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.  

The Monster I Am Living With: PMDD

Crushing weight sinks deep into my fragile chest. Insomnia, I'm already weary but have no hope of finding rest.

Switch in my brain has flipped, can't hold back as the monster inside bursts free. Losing all control, wreaking devastation wherever I go, it's then that I know, that as sure as gravity on earth I am back in its throes.

Depressive Tsunami overtakes me, washing clean away all of my self worth. Tormented woman desperate to stop it... Defeated despite the hard fight put forth. It's like a psychotic carnival ride, can't stop going around and around in my broken mind.

Anxiety and fear no one can understand brings salted tears ʼtil I am virtually blind. How can this damn life be so unkind??

Misery is embodied in me, taking away my hope for good life, hatred for the man who loves me most taking away my hope to be a good wife.

Migraines. Body aches. Sensitivity. Short fuses. Darkness. Hysteria. Forever on edge, pushing me to LOSE it.

I mean really how many times can my kids hear mommy's having a bad day, before they too feel abandoned and pushed away?

We stand on opposite sides of the same door secretly pleading: I've done nothing wrong why do I still have to pay?

Heartbreaking.

I hide out in my restroom cuz it's the only place I can truly be alone, keeping everyone safe from me, staring into a mirror and seeing nothing but the monster I am living with: PMDD.
~Carrian Troxler

The Voices of PMDD, A Guest Post on Shattered Dreams

Continuing with my Summer of 2014 Voices of PMDD series, here is a post written in 2012 by a woman with PMDD that addresses the reality that what you see/experience of PMDD from the outside, as a partner, friend, colleague, or family member, is only the tip of the iceberg compared to the devastation that is going on inside the mind, body, heart and spirit of a woman with PMDD.  

Aside and apart from the episodes of PMDD themselves, there is no way on earth to measure/account for/quantify the cost of the shattered hopes and dreams of PMDD women (and our loved ones) due to our PMDD.  The fallout from these broken dreams is something a woman with PMDD has to deal with every single day of her life--not just during an episode.  The weight of our perceived failures, while staggeringly heavy when we are not in the PMDD zone, can prove unbearable during an episode.  This, I believe, is a good part of what leads to suicidal thinking. 

That said, I give you "The Hidden Injury of PMDD"

“I wanted to quit because I was suffering. That is not a good enough reason.” – Ted Corbitt

I almost decided not to write about PMDD.  The thought of sharing what is considered a mental weakness leads to an automatic assumption that I am a little off my rocker.
 
No one intentionally judges someone with bi-polar disorder or depression.  It is a slight shrinking away from the unknown and the unstable.  PMDD is similar to being bi-polar.  The difference is the consistency.  PMDD will hit every two weeks like clockwork.  About every third cycle, in my case, it is so severe I have to talk myself out of suicide.  My muscles and joints hurt so bad I feel my bones will crumble if I move too fast. Typing hurts.  Rolling over hurts.  The sadness is so deep there is no hope, no joy, no future.  It is only darkness for days and days.  And right as the pain is going to consume my mind and body, my cycle begins and the world is turned upright again as if the previous two weeks never happened.

It is vicious.  It is destructive.  It is painful and it is never ending.

I am told by those around me I am outgoing, extroverted and can do anything I set my mind to to. That is until they see me fall and wonder what happened.

I was just as confused until September 2011, when it became clear there was a pattern to the insanity.

My husband and I were in the middle of trying to start a photography and real estate business when it became clear we were facing something much bigger than we could have ever imagined.  I would soon discover my ambitions would be pulled out from under me like a ugly, worn out rug.

Up until then, I had hope I would one day shake whatever it was that tripped me up so much.   We thought it was connected to the abuse from my childhood or maybe my walk with God was really weak or maybe I was just a weak person in general.  Maybe, just maybe, if I tried harder, or prayed harder or exercised harder or ate better or something!!!!!  There had to be something I was doing wrong.

After we narrowed the diagnosis, I began facing the fact, I couldn’t do everything I dreamed of doing….and that pain is another post entirely.

I knew something was wrong, but I had no idea the symptoms grew worse and worse as you get older.  It made sense though, as I was moving into my 40’s, why the intensity was growing.
Friends only see me when I can leave the house. I venture out when I have energy and drive. This causes so much confusion when I meet new people.  I am vibrant and joyful at first and when I am pressured into social situations during the “luteal” phase, they see a quiet, sad often “sick” stranger they don’t recognize.

I can’t imagine how it is interpreted.

I cancel coffee dates, go two weeks without answering my phone, drop out of obligations I make during my good weeks.  I’ve since learned the crash will come and I have no business volunteering, working, serving or reaching out to anyone.

I’ve lost jobs, quit jobs, started and quit businesses, started and quit homeschooling over and over, lost friends, went on uncontrolled spending sprees, started arguments and walked away from relationships to save them from myself.

I wish at times, I had a physical ailment.  A limp, a scar, a broken bone or even cancer.  At least then, when someone met me they would have evidence of my disease.  They would be able empathize and process the injury in their own mind.

Instead, the injury is inside my mind.  It is not visible unless you live under the same roof.
It is hidden behind a mask I wear everywhere I go.  I can’t escape from the betrayal of my mind and body every month.  It is always taunting me…always waiting silently to paralyze me yet again and destroy everything I begin to build.

I’ve learned not to build anymore.  That is what hurts the most.

The Voices of PMDD, The Other Side of PMDD

This week I'm going to redirect you to two of my favorite posts....after a while, posts get shuffled out of sight, and unless you know they exist, it's hard to find them.  But based on letters I've received and comments I've read over the past few weeks, these two are well worth posting again... 

The Other Side of PMDD

and

The Other Side of PMDD, Continued

Each is about what it is like to experience an episode of PMDD from inside a PMDD woman's mind.

May these posts bring you some answers and relief.  They can also be helpful for partners to read.

Be blessed,

Liana

Liana Laverentz is the award-winning author of two books on PMDD, PMDD and Relationships, and PMDD: A Handbook for Partners.  Both books are based on the most asked questions by her readers, and therefore the most popular posts on her blog, Living on a Prayer, Living with PMDD.  Both books are also an excellent resource for understanding your PMDD and starting a meaningful conversation with loved ones who want to know more about this debilitating disorder we live with daily. 

Is PMDD Real? : A Psychotherapist with PMDD Shares Her Story

Today we have a guest post from Dr. Chantal Gagnon, who has been kind enough to fill in for me while I continue my research on progestins and progesterone.  Thank you, Dr. Gagnon, and welcome!

IS PMDD Real?

THE SHORT ANSWER: Yes, it's real.

THE LONG ANSWER

PMDD can be thought of as an extreme form of PMS (Pre-Menstrual Syndrome), but with symptoms that are more severe and debilitating. PMDD symptoms can be physical, such as bloating, headaches, breast tenderness, etc., but typically the symptoms that have the greatest impact for women with PMDD are emotional and behavioral symptoms. For up to two weeks near the time of their period (but less time for some women), PMDD sufferers can experience a range of emotions and behaviors, including depression, suicidal thoughts, anxiety, tension, irritability, anger, even to the point of rage, self-loathing, mood swings and feeling overwhelmed. These symptoms can often feel severe or extreme. It's common during this period of time for women to start fights, give people "a piece of their mind" (i.e. become verbally abusive), and perceive their mates negatively. Sometimes women quit a job or end a relationship or scream like a banshee in the midst of an episode.

What causes PMDD is a sudden drop in the neurotransmitter Serotonin following a shift in hormones as a result of the menstrual cycle. The same biochemistry is implicated in PMS, but women with PMDD either are more biologically sensitive to hormonal shifts in general, or the hormonal shifts they experience are bigger. Depending on which study you look at, this disorder affects between 5% to 10% of women, and may get worse with age (30's and early 40's), possibly because stress can make symptoms worse (women report more stress during the years of raising a family and building a career).

How I Discovered I Had PMDD

My first semester as a counseling student I took a course on psychopathology (mental health disorders). The class was focused on learning and understanding the diagnoses listed in the DSM - the Diagnostic and Statistical Manual of Mental of Mental Disorders published by the American Psychiatric Association (APA). We also learned about disorders that the APA was considering adding to the next version of the DSM. PMDD was one of them. I remember thinking at the time: "This is complete BS! These psychiatrists are taking normal PMS and making it a "disorder" so that pharmaceutical companies can sell more drugs." So, for the first several years of my career, I did not believe PMDD was real. I even did a presentation in another class about how the DSM tries to create "disorders" out of normal behavior, and of course, I included PMDD in that presentation.

I was wrong. I discovered my error in judgment when I developed PMDD in myself in my 30's. I noticed that a day or two before my period, I became suddenly and severely depressed - everything in my life seemed hopeless. It was almost as if I was a different person. But the day my period started, I felt completely better. Weird, I thought. But then, the pattern continued and I became more aware of it. Sometimes my symptoms were depression-related, other times it was irritability and anger. When I got married, it got worse because I couldn't isolate myself from people during those few days of my cycle (which had been a fairly effective coping strategy in the past). My husband was always around now :) So, unfortunately for him, he got caught in the PMDD storm!

Finding Resources and Learning to Cope

So, Ken (my husband) and I began looking for answers. I had a hunch PMDD might be the issue, but I had never really believed it was a real disorder. Plus, I wanted to be mindful to not just be making excuses for my bad behavior. Around that time, we found Liana's website and blog: Living with PMDD (www.LivingWithPMDD.com). Wow, what a great resource! Through her site, a book about PMDD, and discussion board posts from other women relating their experiences with this disorder, I discovered that this was indeed what I was living. I later confirmed the diagnosis with a psychologist, and my husband and I have developed coping strategies that are effective for us, and for my particular symptoms. Needless to say, I now know that PMDD is indeed real. I'm one of the lucky ones though, because I only experience severe symptoms two to four times a year. With proper planning, improved stress management, and coping skills most months have been OK, and for the months that aren't Ken and I now know how to surf that wave, instead of getting caught in the rip current.

Every women is different, and PMDD manifests differently in different women. If you suspect (or if you know) that you have PMDD, it's important to find compassionate support people, educate your family on the disorder, and put into practice coping strategies that will work for you.

Dr. Chantal Gagnon is a licensed psychotherapist, author, and life coach in Plantation (Fort Lauderdale), Florida. To read her blog or learn about her services, visit www.LifeCounselor.net or follow her on twitter @DrChantalGagnon

The Other Side of PMDD, continued

Since I wrote that last post, and since I was PMDD-ing this week, I really paid attention to what was going on inside my head.   Thursday I was overwhelmed and angry.  Normally I love to feed people, take care of them, give them a hot meal and some home comforts.  But my partner, my son, and I had agreed it would be "fend for yourself" night on Thursday, due to different commitments.  I was therefore "supposed" to worry only about myself. 

But then they both showed up at dinnertime, hungry and neither one of them cooks.  So instead of just worrying about myself, I was suddenly in charge of a meal, and in no mood to graciously pull one together.  Instead I became like a drill sergeant...you, go set the table, you...chop those vegetables....you're in charge of the microwave....you, get us something to drink. 

Not my usual self at all, but I rose to the occasion and kept a lid on my resentments.

Even so, later on in the evening, after we'd come and gone to the Christmas show we were all trying to get to on time, I apologized to my partner for being so...well...bossy. 

He didn't mind.  He said, "You hardly ever get like that.  It's nice to see you're human."

Which got me to really thinking about PMDD and what's going on inside our heads when it happens.  Are we really screwing up, or is it our brain telling us we're screwing up when we are not, and that's what kicks off all the fights and relationship issues? 

Because you know when you're screwing up.  Everyone does.  We don't need people to tell us when we mess up.  Because we know it, inside, when we make a genuine mistake.  Pointing it out to us only makes things worse.  (And I am talking about humans here, not just PMDD women.)  We all get hurt and defensive and either go into withdrawal or denial--or come out fighting.

So here's my thought:  What if we're not really screwing up--we just think we are, and so we act accordingly...by coming out fighting?  The best defense is a good offense...that sort of thinking.

It's something to consider.  Because while I thought I was being overly bossy...he just thought I was trying to get everyone fed and out the door in time.

Fast forward to Saturday afternoon.  I am in a rage.  I know I am in a rage.  Thank goodness I am alone.  I think that is part of why I am in a rage.  I don't want to be alone.  I'm tired of working, and I want to take a break, do something fun.

But at the same time I know that if someone shows up...my partner or my son...that's not going to make me happy, either.  I know this, because in that moment, nothing can make me happy. 

So it was best that they each had something else to do for most of the day.

But meanwhile I stewed.  And anything and everything that didn't normally bother me, suddenly bothered me, big time.

By the time my partner arrived to go to church, I was angry and I. Just. Didn't. Care.

But I had spent the day "watching" myself, or practicing awareness, so I knew I was angry, and I knew there was no reason (aside from my hormones) for me to be angry, and I knew I was being irrational, and I knew I didn't want a fight.

So I asked him...Do you ever feel like you Just. Don't. Care?  You don't care whose feelings you hurt, or who you piss off, or what people think?  You've just had it, and you're just going to say and do what you want to say and do?

He said yes, he had felt like that.

I said, "Well, that's the way I feel right now."  Like I am going to say and do what I want to, and nobody better get in my way.

"I see," he said.

"I'm just warning you," I said.  "So that if I do or say something totally irrational, you don't sit there wondering 'What just happened?'"  I'm in that kind of mood."

Oh.  Okay.

And that was the extent of it.  There was no incident.  We had no argument.  We went to church, and then we rented a movie.  We had a perfectly pleasant evening. 

But I felt better letting him know what was going on inside of me, so that should I snap, he wasn't taken by surprise.

He appreciated knowing I was on the edge.  We settled into a quiet evening together.

"So you can control it?" he asked at one point.

Well...yes, and no.

I can control it up to a point.  But when the dam bursts, it bursts.  And at that point, I can't control it. 

My goal is to keep that dam from bursting.  To keep from snapping out on those closest to me. 

Because it is my goal, I am getting more and more successful at accomplishing it.

But I can tell you of a thousand times where I failed.

Try to imagine walking around with a totally irrational "Don't fuck with me" attitude going on inside your head.  Try to imagine this happening several days a month, like clockwork.  It switches on, it shuts off.  You have no control over when it does either.  All you can do is hang on and hope you (and your relationships) survive the ride.

For instance...take a totally normal exchange at the deli counter when you're in one of these moods. 

The clerk asks what I would like.  The clerk asks "sliced or shaved?".  This question totally pisses me off inside...I'm there every frigging week (not true) ordering the same damn thing (close, but also not true) so why can't they effing remember what I like?  (unreasonable expectation).    

Are you seeing how a PMDD mind works?

Meanwhile, I am smiling and politely answering, "sliced" like I do every time, and feeling like I want to punch the next person who crosses my path.

It's really not about you.  (Although it can be, so don't think you're completely off the hook).  It's about doing battle with thoughts that come out of nowhere and are sometimes voiced before you can stop them.  It's about hearing or seeing or doing something and placing the most negative context on it that you can possibly imagine.  It's about not knowing what you want or how to make it better. 

As I told my partner..."Don't even try to make me feel better right now because you literally can't.  You will not be able to win, no matter what you do."

But there are things we can do to keep it from getting worse.  Sit quietly together, watching a movie or maybe listening to music or napping or reading books.  Hug without talking.  Go for a walk.  Just be together in silence, or at least a peaceful atmosphere. 

For me, silence is best, so that I can concentrate on doing battle with the misperceptions going on inside my head.  So that I don't say something I will regret.

In short, when I am PMDD-ing, don't confuse me by asking questions, or by wanting something from me.  This is a time you either need to give to me (your love and understanding) or get the hell out of my way.

There's really no in-between.