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) 

Great News! PMDD Tied to Sex-Hormone Reactive Genes

Today's guest post welcomes author Eryn Speers' unvarnished reaction to the news that National Institutes of Health (NIH) researchers have discovered molecular mechanisms that may underlie a woman’s susceptibility to disabling irritability, sadness, and anxiety in the days leading up to her menstrual period.  I couldn't have said it better myself, which is why I asked permission to reprint Eryn's original Facebook post here.  

The bottom line is this NIH discovery is good news for us all.  Please be sure to watch the five minute video (link provided) at the end.

I have been through the gambit, had my moments of doubt, and a few good months where I thought I was "free" of PMDD. Chalking it up to stress, or difficult times, only to have it return with a vengeance. In my frustration I began my research again, shaking my head every time I ended up down the same road: eat clean, eliminate sugar and caffeine, get your hormone levels checked, get acupuncture, see a naturopath, try anti-depressants and Cognitive Behavior Theory. The list goes on and on, as we know. What I, myself, have come to realize, is that all this conflicting information just makes it all worse. That's why I am taking this new research as a cue to stop blaming myself, and to stop listening to all the noise and babble about what the "correct" treatment of PMDD is. While it's a good idea for anyone to reduce sugar intake, exercise regularly, and investigate possible food sensitivities - these things will make anyone feel better in general, but to continue to go in circles just adds stress to what is already a stressful situation.

I hope this new research helps others to do the same. Yes, it means we still suffer until they find a way to use the info to come up with a therapy that targets the actual cause of the problem, as opposed to the symptoms. However, at least those of us who are desperate and tired of trying everything to no avail, can try to find some hope in knowing that they are really working on it.

This is a disorder on a cellular level, and I am ready to accept whatever treatments they come up with in order to get my life back. My hope is that those of you who are very anti-pharma will try to trust, for a while, and give yourself a break from feeling that the only one who can correct the problem is you.

This puts so much undo pressure on us, and also nurtures an environment of pessimism and fear. We deserve to feel better! This problem is not caused by us. This is not a matter of poor diet or lifestyle choices, or a hormonal imbalance. All we can do right now is cope as best we can, and we're all doing that.

We're here to support one another, and I feel that we should all encourage one another to stay open to the possibilities as the research advances. Please, I implore you to keep trying new therapies until you are finally free of this awful disease. If you want to take anti-depressants in the meantime because they help, great! If you want to take birth control, or stay 100% natural in your efforts to get through and lessen the severity of your symptoms - also great!

However, please don't let the way this disease makes you feel hopeless and useless allow others to tell you exactly how to approach your own health. Don't let the fear and skepticism of others stop you from trying a drug that has been specifically developed to treat this issue in the future. They ARE working on it.

Please watch the video, and find hope.

Have faith! ~ES

Sharing the Sisterly Love - A Report From the 2nd Annual National Association for PMDD Conference in Philadelphia

The 2nd annual National Association forPre-Menstrual Dysphoric Disorder (NAPMDD) conference was like no other, ever, anywhere. Since continuing medical education credits were offered this year, they had a wide array of medical professionals present, both at the podium and among the attendees—all of them discussing Premenstrual Dysphoric Disorder, a disorder that affects women around the world with life-altering symptoms that revolve around their menstrual cycles.  Clinicians from all fields of PMDD treatment shared what they knew, what they believed, what they had discovered, what could be proven, and what worked for their patients.

For a research geek like me, it was sheer heaven. Nowhere else on earth would I find one location with so many dimensions of medical care for PMDD represented—and openly exchanging ideas, some of them rather heatedly. But to witness a public forum of medical professionals discussing the disorder I have suffered from for over forty years was a dream come true.

My deepest gratitude and admiration goes out to NAPMDD Executive Director Amanda LaFleur and her tireless board of women determined and dedicated to doing all they can to promote awareness and open discussion of a disorder we have suffered from in silence, confusion and neglect for more than the 70 years since it was discovered. In Philadelphia, on the 51st floor of a building overlooking the beautiful City of Brotherly Love, psychologists, psychiatrists, social workers, endocrinologists, gynecologists, medical researchers, reproductive hormone specialists and other PMDD advocates gathered. Several speakers commented that they’d only seen PMDD from their specialty’s perspective until this conference, and they appreciated the opportunity to hear other points of view, as it brought up ideas they had never before considered, and made their PMDD picture more complete.

Surprisingly enough, one thing everyone in the room during a particularly dynamic discussion of treatment options agreed on—the name needs to be changed and the designation of ‘dysphoric’ dropped, to remove PMDD from the realm of mental illness. PMDD is a biological disorder, not a mental one, and needs to be treated as such, and not with the current cache of psychotropic drugs designed to alter the mind.

That was my major takeaway from the conference. No, you are not crazy. That alone made it worth the price of admission.

I also attended last year’s NAPMDD conference in Denver. I would say the major takeaway from that conference was: You are not alone. Between the two conferences, I now have something I didn’t have the first forty years of my life with PMDD: Hope—if not for a cure in my lifetime, then at least for a reliable answer as to what causes PMDD and the best way to treat it. Nearly everyone I heard speaking on the subject, with only one notable exception, said antidepressants and/or birth control were not the answer for treating PMDD, but merely band-aids used to mask the symptoms, which can (and do) rebound worse than ever when this faux treatment stops.

But take heart. Caring professionals are out there studying PMDD diligently. Others want to learn all they can about PMDD, to be able to treat their patients correctly and with compassion. This is progress like my generation merely dreamed of. I am truly energized with hope for the growing number of women still in their childbearing years, struggling with this debilitating disorder. Now, thanks to NAPMDD, there’s a chance you won’t have to suffer like so many women who have come before you, shuttling from doctor to doctor to doctor, being misdiagnosed and mistreated, being told “It’s all in your head” or having your concerns completely dismissed because the doctor had no clue what you were talking about. Not to mention being used as a human guinea pig for countless medications we now know don’t work for PMDD, because while they may aid in suppressing some symptoms, they do not address the root biological cause of what is happening to you.

The second part of the conference was all about support and social networking. Last year, I think we were all simply relieved to meet “other people like us.” This year, we had many return attendees. Instead of anxious, relieved and emotional women dominating the conference landscape like last year, this year we had a strong squad of empowered women who returned to speak about their successes (and failures) in managing their PMDD, and to provide support and resources to those attending for the first time. Many new attendees brought mothers, sisters, friends or partners for support, and it was beautiful to see. The atmosphere was just as warm and welcoming as last year, if not more so. The Gia Allemand Foundation Reception Friday night was open to the public, and provided a fantastic opportunity to meet and mingle with both attendees and speakers. 

At the reception I had a fangirl moment when a PMDD researcher I’ve admired for years sat at our table and I told her, “I have a special binder full of all of your studies.” In exchange, she told us how she got into PMDD research and how inspired she is by the increasing awareness of PMDD in the medical community. Other highlights of the weekend include a tour of Philadelphia on a double-decker bus with ten other conference participants, exchanging ideas over breakfast with fellow speakers and drinks and snacks at the Tap House with Executive Director Amanda and our wonderful videography team at BKN Creative. I returned home with friendships I know will last a lifetime.

So the conference is not just about exciting news and taking notes. It’s also about having fun with friends and creating a network of support and resources you can count on during the hard times.

If you missed the conference this year, join NAPMDD to stay in the know, which will provide you with access to the videotaped presentations of both the first and second national conferences, to discover this information for yourself. The cost is $36 and well worth the price of admission. There is also a free membership, but that does not provide access to the videotapes; you’d have to buy them separately.

Knowledge is power, and knowing all of your options can empower you to seek proper treatment for your PMDD, and to stand up for yourself when you meet a medical professional that refuses to believe or work with you to find the individual solution that works best for you. With the information from these videos, you have the tools you need to be your own best advocate.

For more information on NAPMDD and how to attend their next conference, go to NAPMDD.org.

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!

Taking Time Out to Catch Up on My PMDD Research

It’s Wednesday, and time to put up another post. Things have been hit or miss the past few months, due to having so much non-PMDD stuff going on in my life, and not having enough time to write any well-researched posts. I’m grateful to Cat Stone for allowing me to share her awesome artwork and PMDD Crisis Guide, which has allowed me to keep something new and fresh on the blog at least every other week. She’s been a lifesaver in that regard.

Yesterday, when I was thinking about what to write for today’s post, I realized I once again didn’t want to throw something out there just to have something to post. This is a blog devoted to helping people with PMDD and those who love them to better understand this often debilitating disorder. It’s not about me and my ups and downs, it’s about using what I’ve learned to help others to find peace and some sense of normality. So there’s no need for me to share whatever vague thoughts are rumbling around in my mind just to fill up an empty space.

That said, I haven’t been completely idle regarding the blog. To follow up on my last post, I’ve been busy doing more research into the connection between PMDD and the cycle of menstruation—have uncovered some fascinating stuff--and once I have my thoughts and facts in order, I’ll post them here. On a more personal front, I’ve been seeing a nutritionist in my ongoing efforts to manage my PMDD. That is not going well, and when I write up the account of my experience, I’m sure a lot of you will nod your heads in understanding, as I’m sure many, if not most of you have experienced the same frustrations. But again, I need to wait until my research is complete to write about it.

So for this week, I invite you to browse through past posts—a good place to start would be the over on the sidebar, under Popular Posts. (I’ve moved it to the top of the page for now to make it easier to find.) You’ll notice three of the top ten are posts for men on how to deal with a partner who has PMDD. Lots of good information there, and well worth reading (or passing on to a caring partner) if your relationship is in any kind of trouble.

Another good post is More Things That Make Your PMDD worse. A Perfect Storm of PMDD describes in detail what it’s like to have an episode of PMDD. And if you haven’t read it already, my favorite post is They Only See Our Failures.

Until next time…please continue to read, learn, rest, relax…and Be Well.