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