PMDD and Suicide in the Luteal Phase Needs More Research: You can help!

Below is a request for help from a fellow PMDD Advocate.  Please contact her if you can help.  Together we can save lives.  And please go here to see the documents she has found so far.

Hey all

I need help.

Tonight I piqued the interest of my psychiatrist when I quoted a post from another PMDD group, "23 completed female suicide autopsies were performed - 22 of those were in the LUTEAL PHASE of their cycle." His jaw dropped. 

Last night I did 20 mins of research into the following theory that has been in my head for the last 12 months. 

Here it goes:

The true number of completed suicides resulting from PMDD cannot be known until all coroner reports are researched to see where the individual was at during her menstral cycle. Right now, even if 100% were in the luteal phase or menstruating phase of their cycle, it is highly likely those individuals would have a previous mental health diagnosis of another kind. For example, borderline personality disorder or bipolar, given PMDD mimics the symptoms of these two illnesses. Therefore, the completed suicides would then be attributed to either of those illnesses and not PMDD. 

IF PMDD is the culprit and merely mimicking BPD or BP, until further research is done and looked at, PMDD suicide rates will not be truly known. The accuracy of actual lives taken by PMDD cannot be measured. 

Therefore, it is imperative that further research into historical data on completed suicides and the menstral cycle stage the individal was at during the time of death is done - the true cost of lives due to PMDD suicides will not be known and neither will the severity of PMDD and it's potential to kill be taken seriously (thus SAVING lives). This is intricately connected to the amount of knowledge and extensive research that has been completed on BPD/BP and the lack of such for PMDD. 

If menstral cycles are indeed playing a part in the timing of completed (or attempted) suicides, it is currently the ghost in the machine.

Until this is ruled out, or confirmed, the true cost of life via PMDD deaths will not be known and neither will PMDD be taken as seriously as these other well known illnesses that it mimics. 

Could it also be that these illnesses are so prevalent in women to men (75:25) because of the mimicking and this unreasonable ratio of women to men is because PMDD is being counted as BPD or BP? If studies were completed and found menstral cycles to be a factor in completed suicides, could this be the turning point in diagnosing and treating PMDD in a more efficient and successful manner? 

Could understanding if menstral phases play a large part in completed suicides completely change the way in which the entire mental health system treats women? 

If the answer is yes, we are talking absolutely ground-breaking earth-shattering information that would change general practice, gynecology and psychiatry. It would blow everything out of the water. All of it. The whole medical industry would be brought to their knees... because right now, it is dismissing it as merely bad PMS when in fact, it is possibly one of the largest contributing factors to SUICIDES in the female population. 

So while my Doctor listened to me ramble about this, at the end of the spiel he told me that he thinks I'm on to something. I have spent an hour on Google and I am finding research mostly in Asia and India into this, but some say there is no evidence to show menstral cycles play a part in suicide while others have found 90% of 200 women were either menstruating or in the luteal phase when they died! 

If I can find studies for him - good/bad/ugly/useless, he is going to present it to one of the most prestigious universities in Australia as a PhD Thesis option for students. 

He flat out agrees that something is not right here. 

So.

I'm asking if everyone can help me out and comment with links they find into anything about this (please include the citation and page number). I can't do this alone and I really need some help this time. 

I feel this may be a big opportunity. I could be wrong, but ANY research into PMDD and ANYTHING that could save another life from being stolen by this illness, is worth our time. That's why we are all here. 

Australia is starting to light up and the ball has started to roll. This is another opportunity to possibly change something most of us think we won't live to see happen. 

Maybe, we will. 

If you can help me, please. I really need help with this one. 

Brie

(The Faces of PMDD) 

World Health Organization Validates Premenstrual Disorder as a Global Health Concern

BOSTON, MA, 14 June 2019 --  In a landmark decision, the World Health Organization (WHO) has added Premenstrual Dysphoric Disorder (PMDD) to the International Statistical Classification of Diseases and Related Health Problems, Eleventh Revision (ICD-11), validating PMDD as a medical diagnosis worldwide and confirming the growing scientific and medical understanding of this little known, debilitating and life-threatening condition.

This groundbreaking move gives PMDD its own ICD code (GA34.41), which will help drive diagnosis, treatment, reimbursement, and research. A staggering 60 million people globally, 1 in 20 people with menstrual cycles, suffer from PMDD, caused by an increased sensitivity to reproductive hormones during the luteal phase between ovulation and menstruation. This sensitivity leads to alterations in the brain chemicals and pathways that control mood and well-being. Symptoms include severe depression, mood swings, irritability or anxiety, and drastically increases the risk of suicidal behaviors. Appropriate diagnosis and treatment of PMDD are therefore important not only for reducing suffering but also for saving lives.

“This decision is a game changer for PMDD,” according to Sandi MacDonald, Board President of the International Association for Premenstrual Disorders (IAPMD).  “The WHO has officially classified PMDD as a true and diagnosable disorder, and differentiated it from the wide collection of premenstrual symptoms commonly known as PMS.”

Historically, PMDD has been studied and treated by both (1) nervous system (brain) experts (neuroscientists and psychiatrists) and (2) reproductive system experts (reproductive endocrinologists, obstetrician-gynecologists). This multi-specialty approach has been reinforced by PMDD’s ICD-11 cross-listing in multiple chapters; the chapter on mental, behavioral, and neurodevelopmental disorders, as well as the chapter on diseases of the genitourinary system (system of the reproductive organs and the urinary system). This will foster more effective collaboration between these specialties.

“Given that evidence-based treatment algorithms for PMDD require a broad set of clinical expertise and skills, it is becoming increasingly clear that multiple providers with different specialties are required to offer truly comprehensive care for PMDD,” according to Tory Eisenlohr-Moul, PhD, IAPMD Clinical Advisory Board Chair and Associate Director of Translational Research in Women’s Mental Health at the University of Illinois at Chicago.

“The IAPMD recommends that clinicians build collaborative, multidisciplinary treatment teams for PMDD patients in order to facilitate patient access to the full range of evidence-based treatments. It is our hope that the inclusion of PMDD in ICD-11 will facilitate greater collaboration among treatment providers of differing specialties,” added Eisenlohr-Moul.

The ICD is published by the WHO and used worldwide for morbidity and mortality statistics, reimbursement systems, and automated decision support in health care. In May 2019, member states agreed to adopt the ICD-11, to come into effect on 1 January 2022. The system is designed to promote international comparability in the collection, processing, classification, and presentation of these statistics. Like the analogous DSM (which is limited to psychiatric disorders and almost exclusive to the United States), the ICD provides a common language that allows health professionals to compare and share health information across the globe.

The International Association for Premenstrual Disorders (IAPMD) is the leading voluntary health organization which aspires to create a world where people with Premenstrual Dysphoric Disorder (PMDD) and Premenstrual Exacerbation (PME) can survive and thrive. Our mission is to inspire hope and end suffering in those affected by Premenstrual Disorders (PMDs) through peer support, education, research, and advocacy. What began as a collective of fellow suffers in 2013 has grown into a global movement accelerating the progress being made around the world.

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.

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

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.