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 Self-Awareness - What Has Your PMDD Taught You?

Today's post is an insightful guest post that describes a journey of self-awareness.  I have long said that self-awareness (and then self-acceptance) is the key to mastering your PMDD. You know yourself better than anyone else does.  Take the time to get to know you, and learn to be your own best friend. Not a moment of that will be wasted, because doing so will bring you many steps closer to wellness.  Get to know who you are on good days and bad days.  Learn to love and accept all of you.  For me, personally, the results were life changing.  I learned to focus on my strengths, and, on days when I could not be anything resembling strong, to focus on my needs. My guest today shares the difference it has made in her life, and in the comments we both hope you will share what you have learned about yourself through your PMDD.

Ladies here is what I have learned about my PMDD, or what PMDD means for me:

1) Low tolerance for fake and false people.

2) Hate lies and lying.

3) Low tolerance for people pleasers.

4) We are super intuitive and creative (could be blocked).

5) Don’t push me or have me multi-task above the pressure I put on myself.

One thing I am grateful for is PMDD has allowed me to get to know all of me, the good, the bad, the ugly. Yes, I am super loving and passionate and I can get super irritated and angry as well especially if I feel sarcasm, slimy, abusive, inauthentic, people pleasing, shifty behavior.  Also, to the ‘super smiley-my life- is-perfect people’ - I don’t buy it one single bit.

I am glad that I know my rage, I know her well.

I know my grief, I get down on my knees and weep.

I know my sexy bad ass, she can be sensual AF.

I don’t want to be around fake people or people pleasers, I will have to mirror that bullshit.

I am not interested in small talk.

I am an extrovert but my introvert demands a lot of alone time and I love her for that!

I need to create and often. If I don’t I get cranky.

I need alone time. If I don’t I become a bitch on wheels.

BOUNDARIES are super important.

Successful relationships are ones that are mutually beneficial and fair. I have stepped away from all the ones where I was giving more.

I follow my turn on. I don’t bother if I am not turned on by a place, a person, an event, a function. If I do go I will just become cranky.

My anger and my bitch are there to protect me to remind me to get back into my body and out of my head. To tell me when I have self-abandoned me in order to please someone else or self-sabotaged me away from my dreams.

Next time I will be kinder to me and not leave me again.

No means NO and does not convert to yes the more you whine or beg. With my kids: I am your mom, I won’t always be popular. Suck it up.

On any request: I will tune into my body and ask Do I want to do that now with this person? (It's okay to say maybe another day).

I need variety. People and places. Sameness bores me.

Nature turns me ON. It’s not a luxury but a necessity!

My body needs to move! OFTEN.

Music makes me FEEL good!!!

I would love to hear what you have learned about yourself on your PMDD journey.

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.

Today is World Mental Health Day - PMDD

This from the Gia Allemand Foundation:

Today is #WorldMentalHealthDay and this year's #WorldMentalHealthDay focuses on mental health in the workplace. Coping with PMDD in any aspect of your life is a challenge. Dealing with PMDD at work can be especially difficult.

Maintaining a business demeanor when you are experiencing violent mood swings, fatigue, anxiety, and often physical pain related to PMDD can seem an impossible thing to do. You may find that you need to be absent from work while your PMDD symptoms are at their most severe. You may wonder if you can do that without losing your job. Thankfully, in the United States, there are some measures you can take to ensure that you can take the time off work that you need in order to cope with your PMDD symptoms without losing your job.

For more information, and for access to valuable tools that may be helpful to you in your journey no matter were you live, please visit this Gia Allemand Foundation page.

Liana adds:  Remember, PMDD is an explanation, not an excuse, and is something that happens to you that you don't have any control over it happening. The only thing you can control is how you respond to your PMDD.  Just know you are not crazy, and that you are never alone.  Even though, I know, it totally feels like you are.  But you are not.  Help is available.  

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 Quote of the Week

PMDD - It's not just mental and emotional.  

~Horrible, horrible anxiety tonight, along with every joint in my body aching.~

~Exhausted, and falling asleep against my will all day...~

~PMDD is sometimes like being a prisoner of your own body.~ 

~The thing is, at the toughest time of the month, I don't "cry" -- I just close my eyes and tears stream out of them.~

~I have almost taken my life numerous times in the past, unaware of what I was dealing with, thinking it was some moral failing on my part.~

PMDD can also affect us physically and spiritually.  We can feel on top of the world one minute, and the next be on our knees praying for the strength we need to get through the next day, hour, even the next minute.  Most times there's no way to prepare for its arrival, as the nightmare that is PMDD can creep in slowly, or broadside us in a blink, and totally without warning.  

PMDD Quote of the Week

Getting out of PMDD is as if someone who is strangling you around your neck, suddenly decides to let you live.  Slowly releases their hands and you feel the air kicking into your lungs, and you immediately start appreciating your life, your talents, and your inspiration for life.  And you feel accomplished for making it one more time... Congratulations, strong ladies!  ~Miroslava Byrns

A Special PMDD Quote of the Week for Easter

I love this quote and am sharing it not because it shows that there's something lacking in us.  It's not about us not being whole...It's about us being strong and fierce in our will to follow our dreams and live every day the best we can despite having a thorn stuck in our side.  It's an ode to every one of us for waking up, despite wanting to never open our eyes again.  It does make us more complete than ever... Having to deal with something we never asked for has certainly changed us and I want to believe that we have changed for the better or at least try to, every single day. ~Neha Rajawat

I thought this an especially appropriate quote for Easter, a time that is almost as busy and stressful for women with PMDD and their families as Christmas. Therefore I wish you a moment to yourself, the strength to dig deep down and survive the weekend no matter what you are facing, be it chaos or isolation, and the certain knowledge that many, many others who have PMDD know and understand what you are going through. You are not alone in your struggles on this, or any other day. ~Liana 

PMDD Quote of the Week

Women with PMDD want to feel normal,  We don't want to admit there's something going on in our brain that isn't right.  Something that even the medical professionals can't agree on, much less define.  We can find a thousand excuses for why we are so clumsy at times, or so ravenous, or irritable, edgy, disoriented, anxious, or weepy.  We deny and deny and deny there is anything wrong with us, or that we are in any way acting strangely, because to admit that we are doing so means we will have to stop and deal with it somehow, and how can you deal with something that defies description?

Sometimes it's a battle you just don't want to fight. 

From my books, PMDD and Relationships and PMDD: A Handbook for Partners  

PMDD: A Handbook for Partners

At the request of my readers, I have written a PMDD book especially for partners of women with PMDD:

PMDD: A Handbook for Partners  

Does your wife or girlfriendʼs personality change drastically every month? Like clockwork? Youʼre far from alone. It could be Pre-Menstrual Dysphoric Disorder, or PMDD, a debilitating hormonal disorder which affects 3 - 8% of women in their fertile years, including many using birth control. PMDD is what makes it seem like sheʼs gone Dr. Jekyll and Mr. Hyde on you once, sometimes twice a month. Sometimes even for half of each month or more.

Inspired by the most-read posts in the blog Living on a Prayer, Living with PMDD, this book is for the partners of women with PMDD. Inside you will find insights as to what is going on in her mind during her seemingly inexplicable bouts of confusion, irritability, anger, rage, fear, anxiety, sadness and/or despair, what contributes to her state of emotional chaos, and tips on how to cope with and care for the woman you love during these, her most vulnerable days of the month.

Thereʼs no need for you to ride the rollercoaster of PMDD like you do. There are ways to help her manage her PMDD. Let this book help you to do just that, and find peace in the midst of the wildly careening emotions that PMDD brings into your relationship and life.

On sale now for Kindle at Amazon.  Introductory price of $4.99.  Available in print from Amazon as well for $9.99.  More than 200 pages of information and understanding about what itʼs like to be caught up in the unpredictability of a relationship with a woman who has PMDD, and what you can do about it.

PMDD Doesn't Do Normal

A guest post from a reader who understands her PMDD well, but didn't always...didn't understand it at all for more than two decades...  I am posting this because she could be any one of us...  Any one of us at all.  

Living amongst demons.…

I THOUGHT I suffered depression for years and the depression was like a rollercoaster sometimes out of control and sometimes more manageable but always there in the corner like an unwanted house guest. 

I THOUGHT I “just” had bad PMS and could get enraged at the drop of a hat.

I THOUGHT that was just my way of life now—I was unhappy in my marriage but accredited that to my issues with ‘depression’.

I THOUGHT about all the symptoms I had and how some didn’t quite fit in the depression tick list and how I couldn’t even fit depression correctly.

I THOUGHT pills were a way of life but why did they never really resolve anything?  I would up my dosage until I couldn’t anymore...only to find the rollercoaster was now an even wilder ride than before.

Then, just over 2 years ago, after receiving counselling for a childhood issue, I found the courage to leave my unhappy marriage. I spent some time alone and the plan going forward was to concentrate on me and my children and this ‘depression’ that had blighted my life…

...only life doesn’t go to plan and instead I ended up meeting and falling in love with the man who was to change my life in so many ways, including discovering PMDD.

The unveiling of a Monster….

Through a series of unrelated events I met my PMDD.

So here I was, deliriously happy, in love for the first time in what felt like an eternity…

An innocent joke made by a friend:  “You may be happy now but has he seen you at that time of the month, kicking cupboards, punching walls, and slapping him?  That love at first sight feeling may drain then, eh?”

I laughed, and said, “I never hit my ex—always punched objects or throwable items only.  Kicked a few doors through.ˮ

My friend realized I was being serious and asked, “Are you serious?”

“Yes.  Every woman does for a couple of weeks before their period, don't they?”

“Er, no.”

Silence.

Growing up, periods and “embarrassing” women’s problems were not talked about in my house.  At all. I wasn’t told what periods are. I instead have an horrifying memory of blood trickling down my leg in the school changing rooms and me sprinting all the way home, crying, thinking I was dying. My mother ran through a textbook version of This is why and don’t talk about it...

...So I didn’t.

Until a joke about periods made me wonder.

Isnʼt it NORMAL? Doesn’t every woman have extreme rage over silly things? And I don’t mean get a bit moody (although that is in abundance also) but no… rage, like a bubbling anger inside you, a pressure cooker just waiting to explode at the most unexpected time?

Isnʼt it NORMAL?  Doesn’t everyone bleed so a packet of Always can be polished off in a day?  Doesn't everyone have to wear two pads at a time and it still ruins clothes and underwear?

Isnʼt it NORMAL? Doesn’t everyone have a migraine about two weeks before the big day? Not just any old migraine, but a crippling, debilitating, every-sound-is-magnified-and-echoes-around-your-head-like-tiny-hammers migraine, where your strongest painkiller that usually packs your headache away in minutes won’t touch this baby—in fact, it reduces you to tears every month?

Isn’t it NORMAL that your stomach swells to the size of three large melons for a couple of weeks a month, so that none of your clothes fit anymore?

Isn't it NORMAL that cravings take over, where every carbohydrate becomes your best friend and worst enemy all rolled into one?

Isn’t it NORMAL that anxiety reaches climaxes that debilitate you, where day-to-day tasks feel like a high endurance challenge you haven’t the energy to even think about, let alone complete? Where facing people in any situation makes your heart feel like it is going to pound out of your chest?

Isn’t it NORMAL that depression pushes you deep into a pit where you feel complete despair but don’t really understand why, and nothing positive can be included in your world right now because no positivity exists anymore and the world is a dark hell?

Isnʼt it NORMAL to experience so much pain during your period you feel you should be in a hospital, and not on a couch with a hot water bottle?

Isn’t it NORMAL to not be able to look in the mirror because you are so unhappy with this person vacantly staring back at you?

I started to suspect maybe not, maybe this isn’t NORMAL after all...

...then came the Eureka moment, the grand unveiling of my PMDD.

This came from being in so madly in love that one second away from this man made my heart ache…

then suddenly…

I am looking at this man and wondering Why am I with you?

I don’t fancy you.

I definitely don’t love you.

My man protests. “Whatʼs wrong?  You do love me, darling.  Look at all these texts, these photos, these little love videos we sent to each other!ˮ

And then he says:  “Why does this keep coming up every now and then? I don’t understand!ˮ

So I look at these texts, these videos, these photos of a happy couple—but it’s not real.  It isn’t me.  That can’t be me.  Not the real me.  I can’t just “imagineˮ all of these negative feelings I am feeling now, in this moment, not to be real.

“No! Youʼre lying!ˮ

Now I am angry at you.  “Don’t lie! I wouldn’t love you!ˮ

Now youʼre clicking my pressure cooker rage on. I DON’T FANCY YOU, NEVER HAVE, NEVER WILL, AND NEVER WILL LOVE YOU….

Then my period comes and I am awash with love for my man, my beautiful man.

I am now full of another feeling—guilt—guilt that I have treated my beloved like a stranger, and an incompetent, unattractive, unlovable stranger at that. I feel like I was featured in an episode of Supernatural and was being possessed by a demon.

I could see what the demon was doing but had no control until the period exorcised it from my body and mind.

So now it was clear… The reason it wasn’t crystal clear to me for the 20 years previously was my unhappy marriage.  It is easy to blame depression and complete lack of insight regarding a woman’s cycle, but now I have found my soul mate and for two weeks a month we have a relationship that people find sickeningly sweet, the kind where “You put the phone down first, I love you,ˮ “No, you, I love you more…” so WHY, WHY would that change?

EUREKA! 

PMDD!

So for the last two years I have been researching this demon, liaising with my doctors, checking, comparing, having ovulation tests, making notes, diary entries...

...and the conclusion is this monster lives in a closet in my head until it’s time for its centre stage moment.

What have I learned?

PMDD is like a chameleon that can adapt and change to capture its enemy and inflict the most damage.

For example: it goes for my relationship feelings, every month, but my partner is amazing.  We adapt better, we know when it is coming.  I get a mist, literally a mist, I look around and it is like the room has suddenly become foggy. This is my sign it is here, the monster has arrived....

So we don’t panic anymore. We go to PMDD mode.  I give the heads up to my partner.  Instead of sloppy love texts, just four words set in place a temporary change in our relationship.

“the mist has arrived”

From this moment on we are now buddies, just good friends, no attempt at affection because he knows I no longer love him, he knows when what he is saying or doing is setting the pressure cooker switch to on so he backs off, allows me to explode in a safe way or just allows the hurtful words to roll off him.

I am lucky. I have a partner who can help me get through another month, survive another cycle.

BUT…

PMDD is clever.  As I said, it adapts. So now it knows I am getting good at battling my demons. So now it changes... now it cranks my anxiety up to uncontrollable levels where I am panicking about everything and anything... I worry my children will fall down stairs, will choke when cleaning their teeth, my partner is going to be killed in a car crash, have an electric shock from the toaster… and bigger and bigger, more extreme thoughts, thoughts that don’t stop….

It throws me into a pit of depression where I can’t leave my bed for days. Everything anyone says around me sounds loud and doesn’t make sense. 

Why doesn’t anyone understand this hell I am in?

There is no way out… the world seems a dark place… I am broken….

So far I haven’t found anything that pulls me out of this pit of despair.  For now PMDD has won yet another round.  I will let it have its minor victory until I can adapt, until I can change, until I can throw up a quick ladder out of the pit, until I can press pause on the vortex of negative thoughts that engulf me…

And so it is… My cycles have now become rounds in a boxing match… Some I will lose, and some I will fight, and will come out battered…exhausted…bruised… and a little more clued up to this hidden enemy.

But for once, I fit a symptom tick list…

I now KNOW what I am dealing with.  And that PMDD is not NORMAL.

And that makes all the difference. 

Until the next round, PMDD.

I will be waiting.

~K

PMDD Tales from the Front: Hitting Rock Bottom

I have a favor to ask… a gentleman has written to me asking What does rock bottom look like?

His story is in the comments section of my post Dealing with PMDD - Advice for Men.  His wife is in denial about her PMDD, and in other posts I have written that the denial is part of the PMDD, while guest poster Cat Stone added that often you have to hit rock bottom before you seek help.

My rock bottom was in early 2009, when (due to the onset of perimenopause) I realized I was spending more days in PMDD mode than not.  I didn’t like myself, didn’t like who or what I had become (basically a sad, unmotivated recluse) didn’t like feeling so freaking sad for what seemed like all of the time.  I knew I had PMDD, but I was convinced I could beat it with positive thinking and mind over matter alone.

So I went to my doctor in tears, and asked for anti-depressants.  She obliged, but a few days later the PMDD cloud passed, and I put the anti-depressants away (for good), and started my PMDD research in earnest.  The result was this blog, which I started in 2010.

Others, though, have reached a much worse low point before seeking help.

I hadn't alienated friends, family, or co-workers, because I tend to withdraw when an episode hits.  I am also a writer who works at home, so people are used to me disappearing for weeks and months at a time while I work on projects.  So I hit my personal low when I was alone in the house, and it didn't involve any sort of public meltdown.  My tears that day were because I felt like I was admitting to failure...admitting I couldn't handle my PMDD all on my own.

Admitting I had PMDD was never a problem for me.  I was grateful and relieved to learn the nonsense in my head had a name.  It was admitting I couldn't handle it without help that was my personal low.  I wanted to think I was stronger than that.

It turns out that I am.  But I wasn't on that day.

If you would share here when you reached your personal rock bottom, perhaps we can be of some help to this man asking for insight, and, I suspect, for hope …  at least enough hope to allow him to continue to stay in the relationship until his wife accepts that she has PMDD. 

PMDD, A Conversation with Someone Who KNOWS

Trust the process that got you here to get you through.

For today's post, I have taken a rather lengthy reader comment from one of my previous posts and re-formatted my reply to resemble a question and answer session, because, as you will see, the original comment touched on several  questions/ideas many of us have wondered about over time. 

By answering the reader here, I can reach more people.  So here goes:

Hello, Liana, 

I can't thank you enough for having the courage to put this blog out there and then be honest and specific about your symptoms and coping mechanisms as it relates to them. You wrote "No egg, no sadness. Woo hoo! Party time!" which just explained to me why some months feel suicidal and some months LIFE IS WONDERFUL!

Hard not to think one is crazy when all of this bullshit is happening.

Hello, T!  Welcome to my blog, and thank you for taking the time to write, especially in such detail.  I appreciate your affirmation and support.  And yes, the "no released egg, no symptoms" aspect of PMDD tends to throw just about everybody off and make countless women doubt their sanity.  Especially in our later years, as we begin to release fewer and fewer eggs.

It would almost make it bearable if there was a higher purpose to it, a reason why.

I've thought that same thing many times.  One day I decided the higher purpose to my PMDD is to write about it.  I spent many years thinking I was crazy, and then, finally, it hit me that "Surely there must be others out there like me, who think they are crazy.  I need to let them know (through writing about my PMDD experiences and research) that they are not."

So my blog was born during a five month period when my book editing business was slow.  I had three website pages completed before I realized the website was too static, and I needed to do a blog.  20 blog posts later my business picked up again and it's been a struggle to find time for my PMDD research and writing ever since. 

For a few years, I let my research slide.  No time.  Then, when I was ready to start up again, I had to re-do all of my research, in case new information had surfaced while I was busy doing other things.

And it had.  In the past two years, the news about PMDD has increased exponentially.  I get a Google alert every other day about someone writing something about PMDD.  So I go there to check it out.  Because, as many of us have learned the hard way, you can't trust just anything you read on the internet.  There are a LOT of supposed health sites that have jumped on the PMDD bandwagon, just to pull in readers.  Sites that I can now pick out when (because I've been researching PMDD for over a decade) they don't understand the first thing about PMDD.  Old information recycled as new, some information slanted to achieve a certain goal or just plain false, but enough of the article close enough to known facts to confuse someone new to the subject....

Anyway, I decided my mission/higher purpose would be to sort out the fact from fiction, and publish my findings here and elsewhere.

I haven't gotten to the elsewhere part yet, due to family and work obligations, and then, in 2013, there was my surprise brain surgery. 

But back to your comments:  I don't see a lot of people mentioning ANXIETY! as a symptom but it sure is one of mine, a surge of cortisol and other hormones so big it triggers obsessive violent thoughts and then it all subsides once period time gets here.

Anxiety is a huge problem for a lot of people.  I'm not sure if I'm one of them, mostly because I manage my environment around my PMDD,  so I don't put myself in situations that feed my anxiety.  But my anxieties are different from those of others, because there are a LOT of things I think nothing of, that terrify others.  And some things that terrify me, that don't bother others at all.

Educate yourself, learn to love yourself in spite of all the shit your head comes up with; there is some putting up with [this shit] that goes along with [PMDD].

I couldn't agree more, and that is what my blog is about.  I've sifted through probably 90% of the current information on the internet and in books relevant to PMDD and put the best of it on my blog.  If not in the posts, then on the sidebars, where there are links to all sorts of good resources.

For the men, if you love the woman, get educated about this as much as you can, I strongly recommend reading "Female Brain Gone Insane" by Mia Lundin.

I agree completely, and have a link to that same book in the sidebar of my blog.  Another excellent read is The Female Brain, by Dr. Louann Brizendine.

In it [Ms. Lundin] sheds tremendous light on this subject and offers great natural suggestions for relief,  but the only way out [of PMDD] is [to go] through it. [That] doesn't mean you guys take any abuse, but for the love of everything that is holy do not get confrontational—rather go for a walk or something.

Again, I agree 100% and have written three blog posts specifically for the partners of women with PMDD. 

For the ladies thinking hysterectomy as an end to this, PLEASE DON'T DO IT.  It is the easy way out and when the storm-tsunami-holocaust of this mess passes you will need those eggs!  Hysterectomy is the first thing OBGYN offers because it is a money maker.

I agree in that I believe most hysterectomies to lessen the horror of PMDD are unnecessary, and find it very saddening that there are so many women willing to die early (because hysterectomies do shorten your life span), risk their lives with major surgery, and take the very real chance that the operation won't help your PMDD symptoms at all if they don't take out your ovaries as well.  Also, when you get a hysterectomy, you go on hormone replacement therapy afterward, which just messes with your hormones all over again.  I would LOVE to hear from women who have had a hysterectomy for PMDD (not any other reason) and found it to be worth the risk, cost, lost time, health complications, and shortened life span in the end. 

I know your PMDD symptoms make you feel desperate, but I do not believe a hysterectomy is the answer.  Neither does Winnifed B. Cutler, PhD, and her reasons why are outlined in her book, Hormones and Your Health, also pictured in the sidebar of this blog. 

Please, please, ladies, do your research before you make this life altering decision.  Don't let emotion guide you, but rather the facts.

Of course all I have said is from personal experience and is easier said than done. So  please, please, please, take what you like and leave the rest.

To that I add, if you have already had a hysterectomy for your PMDD, just start where you are with improving your health and living the best and fullest life you can for the rest of your days.  Good nutrition, rest, exercise, and lowering stress are a recipe for better health for everyone, not just those of us with PMDD or hormonal mood disorders.

Pray a lot! Talk it out, DO NOT ISOLATE. This monster wants you in a corner and it wants you dead or to make you hurt someone else and usually that someone else is a loved one, although strangers can get a backlash too.

She nails it, don't you think?  PMDD is a monster determined to bend you to its will, and do as much damage as it can to your world along the way. 

I take megadoses of vitamin C, to bowel tolerance and after a few months, something inside is building back up, [and my] energy is slowly starting to come back, [but] JUST FOR TODAY.

One day at a time.  It's all any of us can do.  But vitamin C is a great place to start. 

I am 48 now. Something new is I get my period twice a month for the last two months and I feel my ovaries churning when an egg is released. I also feel hard in the lower belly before [my] period starts (something new).

I, too, get my period more often now.  Every three weeks instead of four. And I can feel when I ovulate as well.

In addition I want to shed some light from another blog I read, women who go through this, usually have had some early trauma in their lives (even or especially if they don't consciously remember) and then, spiritually speaking, the pain (stuck energy) is trying to work itself out of your body through the horrors of PMDD (just something to think about).

Don't sell yourself short, T.  I believe this can be the case as well.  And there have been scientific studies that prove a correlation between a traumatic childhood, childhood trauma in general, and sexual abuse and PMDD.  I plan to write more about it one day.  But for now I will say that for me personally, my PMDD and then period at the end of the cycle is like a huge purging of all that has distressed me in life and not yet been dealt with.  I used to let it take control.  No more.  Now I basically make note of what comes up during that time and deal with it when I'm feeling strong enough to handle it like a responsible adult. 

As for you Liana, you are the first person [to] have actually made feel and believe to the core of my being that this is not forever, that in fact "this too shall pass" and that I am not bad or crazy or being punished by the gods for all of my sins of being an imperfect human.

You are correct.  PMDD does not last forever.  It ends with menopause.  (It does, however, get worse during perimenopause if left untreated.)

You are not bad.

You are not crazy.

And you are not being punished for any sins.

I can't thank you enough and these posts in and of themselves are very cathartic. This is such an amazing twisted, enlightening, terrifying process, that I even wrote poetry a few years back and I never wrote a poem in my life...it is as if the garbage [we] accumulate over a lifetime is trying to get out of you and your true beautiful Self is trying to shine through.

Every woman's experience is different, but yes, writing or journaling about your PMDD can be extremely cathartic, and like I said above, I have long felt that my PMDD brings to the surface many things I tend overlook/avoid/suppress during my "good" times... either out of fear, denial, or the desire to avoid a confrontation.  I have read so many Facebook posts where women describe having a meltdown and then take the blame for the entire incident and don't even realize or acknowledge that the other person was yes, indeed, being a jerk.  (And that anyone in that same situation would have a right to be upset.)  It's always the PMDD that takes 100% of the blame, and not the 50% actions of the other party. 

Ladies, it takes two to make a relationship and it takes two to break one.  It's that simple.

So stop blaming your PMDD for every confrontation/mishap that happens in your life.  Other people do mean and stupid things too...what is their explanation?

Because PMDD is an explanation, not an excuse.  If you take nothing more away from this blog post than that, you will be doing something positive for yourself in 2015.

And now, a fitting farewell from our special guest interviewer, which I think sums up what many of us are feeling and experiencing.

Because [of] ALL OF YOU, I feel less alone, less insane and more hopeful. Something that comes HARD to me, but that I am working on is: SURRENDER, ACCEPTANCE AND TRUST.

As are we all; me, as well.  At the moment, I am working on exactly those three things.  Starting January 1, I've taken a 6-month hiatus from my income-generating work to focus on my PMDD blog and books, and it's going to take a lot of surrender, acceptance, and trust to see this whole thing through.

But letters like T's have convinced me it's the right thing to do.

That said, I join T. in wishing you all love and light and tons of resilience, faith, and strength in the coming year.  Happy 2015, ladies, and may it be the year YOUR beautiful Self shines through!
Blessings,

Liana

Guest Post, Cat's Story: Living with PMDD

I have suffered with Premenstrual Dysphoric Disorder (PMDD) since I was 13, but I was only diagnosed at 27. For over 10 years I had been diagnosed as depressed and in and out of community mental health departments. After stopping the Pill and having a baby at age 21, my hormones went crazy and I suffered pre and post natal depression. In the years that followed I began noticing a pattern to my moods and depression. At times, I thought I really was severely mentally ill. I always had PMS, but I realised  my worst times happened when I was due on my period. My PMS was so severe  it had begun to take over my life, wreck relationships, ruin jobs, studying, and caused me so much emotional pain I often found myself considering suicide. I would become housebound, with no social life or friends and fearful of ever making an appointment because I could never guarantee how I would be feeling.

It was only my persistence and researching that made me realise I did in fact have a mood disorder and not straightforward depression. I Googled 'mood disorders' instead of depression and discovered PMDD – Premenstrual Dysphoric Disorder. I read the only book available at that time, and began to track my moods using a chart from the book. I found a GP willing to listen, took in printed information and my charts and got the correct diagnosis of Premenstrual Dysphoric Disorder. Coming to terms with what that meant took many years, and sometimes I still struggle.

PMS is one thing, many women suffer with moodiness, anger, irritability at pre-menstruation, but my PMDD threatened to destroy everything. As a mother, I felt I wasn't well enough to look after my children, I have been unable to work and feel really separated from the rest of the world. Only 3-8% of women suffer with PMDD, the rest get through each month without disaster. It is very difficult to find people to talk to who understand what I’m experiencing when PMDD is so rare, and when menstrual problems are often seen as something to joke about or ridicule. I have often dealt with comments like 'pull yourself together' and 'get a grip', and even people denying PMDD exists.

PMDD is distinguishable by the dysphoria that is experienced. Feelings of being completely overwhelmed, spiralling thoughts, outrage, anger, frustration, anxiety and suicidal ideation coupled with the physical symptoms, which can include, bloating, IBS, tender breasts, cramps, lower back pain, lethargy, and sleep and appetite changes. I am sensitive to the changes in hormones during my cycle, and I also experience a few days of unstable moods and physical symptoms during ovulation. My PMDD does not occur once a month but twice a month, leaving on average 10-14 days of feeling like me, and the rest being spent coping with symptoms. This will continue until menopause.

I am now 34 and have tried every medication offered to me. I have discovered I am very sensitive to any type of hormone and cannot tolerate the Pill or IUD. I spent a total of 5 years on anti-depressants, which never really worked for me. They took the edge off, but didn't stop the extreme lows and outbursts. I have seen psychiatrists and gynaecologists. At one point, I went through hormone treatment to stop all my hormones and put me into a chemical menopause. This is often a route that works for PMDD sufferers, and many go on to have hysterectomies. Unfortunately, this option did not work for me, and the treatment made me very ill.

I have found that counselling has helped, along with mind techniques such as CBT, NLP and meditation. Finding support is essential. Being able to talk through the irrational thoughts can usually avert disaster. Keeping busy is also a good way to keep the mind focused, so I draw, create, paint, write and bake lots!

I am now medication free for the first time in my life. I have had to learn my cycle and I now plan things around it. I avoid busy social situations when I know it will be too much for me. Eating healthily, regular exercise and avoiding stress has also helped improve my symptoms. Making sure I continue to communicate with loved ones and work through problems, finding strength to leave the house even when I don't want to and being open and outspoken about my disorder all contribute to life feeling easier and less stressful and traumatic. Fitting into society and getting a regular job is a whole other problem. After all, who would employ someone who can only function and deal with stressful situations for 10-14 days out of every month? I focus on my children and being the best mother I can be, my writing, art, and getting through each month without trauma. 

Living with PMDD is very challenging, but I am trying to make the best of my life, for me and my children. There is always hope, the negative feelings and dysphoria will always pass. Life is a rollercoaster but as someone once said to me – you're a long time dead. Women need to speak out and stop being ashamed of suffering from PMS/PMDD. Every voice helps change the way people think and I find talking and being honest is always the best option.

You can find out more by reading my PMDD blog and check out my artwork.