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) 

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   

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.

PMDD - When Women Who Don't Have it Do Harm to Those Who Do

April is PMDD Awareness Month.  Last week, I presented a Quote of the Week from a psychiatrist in South Africa who does indeed understand what PMDD is about and the need to treat it.  This week we present the flip side of the coin--the side most of us are unfortunately all too familiar with--in the form of a guest post by fellow blogger Twilah, written in response to a TED Talk in which a woman psychologist proceeds to negate the validity of PMDD by, among other things, dismissing PMDD and its sister disorder PMS as a cultural myth.

Twilah: This TED talk came to my attention because it was posted on a PMDD forum online. Other women complained that the talk seemed invalidating and dismissive of the illness they live with. I tend to agree with the feedback of the women affected by PMDD. This is my analysis.

The speaker, Robyn Stein DeLuca, opens by gauging the audience’s familiarity with the concept of PMS. She establishes that PMS is a familiar concept with easily recognizable symptoms. She goes on to point out that mainstream American media accepts and propagates ideas and assumptions about PMS.

DeLuca then drops her bombshell that after five decades of research the jury is still out on PMS. It’s poorly defined, treatment protocols vary… it may not even be real! She explains how historically the symptoms of the disorder described by psychologists varied so greatly that the very definition of PMS became meaningless! 

She goes on to outline the shabby research techniques and protocols that characterized the presumably five decades of research she referred to earlier. She claims that the DSM “…in 1994…redefined PMS as PMDD, Premenstrual Dysphoric Disorder.”

Actually the DSM didn’t distinctly include PMDD until DSM 5, which was released in 2013. Prior to that, the DSM 4 included PMDD not as a distinct mental illness, but as a “depressive disorder not otherwise specified.” The speaker heralds the clarity established by the diagnostic guidelines offered in DSM 5. She then points out that under the new criteria in DSM 5 the number of women affected by PMDD turns out to be only 3-8%, which she considers “not even a lot of women.”

So DeLuca opens with a claim that five decades of research hasn’t supported the premise that PMS exists. Then she points out how poorly conducted much of that research was. 

Okay…you are using five decades of research that by your own reports doesn’t count for anything to support your premise that PMS is a dangerous and erroneous cultural creation? It’s generally a bad idea to use volumes of poorly conducted research as support for anything. And a mere 3-8% of presumably the world’s female population is affected? If women are slightly less than 50% of the estimated 7 billion humans on this planet, and about 2 billion of these women are menstruating, then 3% of menstruating women translates to roughly 60 million women with PMS/PMDD…whichever she is calling it right now…because she wants to undermine a PMDD diagnosis by conflating it with a cultural concept of PMS!  (Liana speaks up:  I want to say here that PMS and PMDD should never, ever be used interchangeably, as they are two separate conditions, and while PMDD affects 3-8% of menstruating women, PMS is said to affect approximately 80% of menstruating women. That means this woman, aside and apart from the huge disservice she is doing to women who do have PMDD, is also dismissing the monthly experiences of possibly another 1.6 billion women and calling it "good news".) 

Head spins…

She goes on to posit that, “the PMS myth” persists because of cultural limitations on the role of women.

Now I won’t argue for a minute that many cultures, especially the American one to which she is primarily referring, frequently limit the roles of women. Popular conceptions of PMS have been used by sexist people to minimize women’s speech and self-advocacy. That is undeniable. But the irrational interpretations of a sexist culture have zero bearing on whether a medical condition is real. Many well established medical conditions are stigmatized and used to oppress individuals affected by the conditions. Think of any disease that might cause a person to wear a colostomy bag, think leprosy, think any one of legions of mental illnesses. Simply because a culture uses a diagnosis to oppress a person with the diagnosis does not mean there is no validity to the diagnosis. The cultural interpretation of the illness needs to be addressed, the disease doesn’t need to be denied. 

DeLuca’s assertion that PMS is a largely Western concept is irrelevant also (Liana: as well as totally untrue). Lots of women’s health issues are more marginalized in non-Western societies. That has no bearing on their realness or validity. If society at large and physicians in particular choose not to discuss the high infant mortality rate in any country that doesn’t hold women in high regard, that doesn’t mean high infant mortality doesn’t exist in that country. That means it isn’t talked about or researched in that country.

To say that diagnosis and treatment of PMS or PMDD is anti-feminist is more hurtful to 60 million women than much run of the mill sexism. To have other women, who we would hope are our allies, take a stand to deny us diagnosis and treatment for a life threatening condition is morally reprehensible. 

Because that’s what PMDD is. It is a life threatening condition. The 3-8% of women who are affected by this disease experience job loss, relationship difficulties, relationship loss, depression, and potentially suicide. And this woman thinks it is helpful to stand up in a forum like a TED talk and tell people that it’s really no big deal that over 60 million human beings deal with this disease every month? To suggest it is a cultural problem and not a medical problem? She criticizes what she calls “the medicalization of women’s reproductive health.” I criticize the politicization of a medical disorder. I criticize speech that discourages further well conducted research into a life threatening illness.  (Liana:  Up to 30% of women with PMDD regularly experience suicidal ideation or attempt suicide.  15%  those succeed.) 

The root of the problem is not a cultural misperception about PMS. The root of the problem is that an endocrinological disorder is being treated as a mental illness. The problem is that the hormonal health of women is being handed to psychologists and psychiatrists for treatment. Imagine going to a psychiatrist for your diabetes or your hypothyroidism. What do you think the outcome would be? What do you think the data would show? Imagine a man being told to go to therapy instead of being given testosterone supplementation for age related testosterone production changes.  (Liana:  I half agree, but also disagree.  If psychiatrists and psychologists are the only medical professionals attempting to take PMDD on, then I would gladly go to them over accepting no medical help at all.  But I do believe PMDD is more an endocrinological disorder than a mental one.)

DeLuca says that, “…the success of medication in treating PMS symptoms vary from woman to woman.” She uses that as evidence to support the invalidity of a PMS diagnosis. Of course the success rate of using psychiatric drugs to treat a hormonal disorder would have varying rates of success! Considering the efficacy of antidepressants to treat depression is disputed, with estimates ranging all over the place, it’s not surprise the efficacy is unpredictable when you prescribe a psychiatric drug for an endocrine condition. I’m sure you’d find the same kind of inconsistency if you prescribed Prozac for erectile dysfunction. A man just might get an erection because increased serotonin made him happier overall. (Liana:  If the medication doesn't work, that does not mean the condition is not real.  It means the medical options provided are not addressing the medical issue.)

But wait, we’re talking about women.

This presentation is so off base. The problem isn’t that a make believe, culturally based illness is being given credence. The problem is that a hormonally based illness is being investigated by mental health professionals, simply because one aspect of its presentation is similar to recognized mental illnesses. The problem that American society uses the term PMS to dismiss or demean women’s emotional states is a completely separate issue from research and treatment of a disease that may affect more than 60 million women. The problem is that an educated women would stand up in front of an audience of thousands and undermine the health concerns of millions of fellow women.

Let’s not back away from helping women because existing research is incomplete or inconclusive. Let’s fund more and better studies. Let’s take seriously the complaints of millions of women that their health is being affected by their hormones. Let’s listen to women’s voices instead of dismissing them. 

Twilah's blog can be found here.  

The Voices of PMDD: Our Seven-Year Struggle With My Wife's PMDD

Recently on Facebook I came across a conversation where one couple who had experienced PMDD was reaching out to help another. The first woman had asked her husband to write a letter to the other woman, to help the second woman explain PMDD to her husband. She then posted his letter on Facebook. I knew right away this man's wisdom and clarity could help so many others...so I asked the couple if I might share the letter on my blog, and they graciously agreed.

Her name is Twilah, and she has a blog of her own, one having to do with navigating the American medical system. His name is Alec Johnson, and here is his letter:

I was asked to write this in an attempt to explain PMDD from my perspective as a husband who has experienced PMDD. I am also a Clinical Scientist with a quarter century experience in medicine and healthcare. I can tell you from my experience, PMDD is one of the most difficult disorders [to diagnose and cope with], for both the patient and her family.

I speak from seven years of experience living with my wife, who was Jekyll and Hyde. I only hope to provide some assurance to you that your feelings of frustration, anger, hurt, and disbelief are normal and understandable.

I also wish to convey from a clinical standpoint that your wife is not making anything up, nor is she able to control her disorder. Even if she had the greatest willpower of any human, she cannot will a hormonally-mediated disorder away.

My wife is a very intelligent, driven, and willful person whom I adore. That's why I married her! When we met she was a runner who ran 4-6 miles every day of the week. She was less than 10% body fat, and thus did not have periods. It is common for women with this low amount of body fat to stop menstruating. When we began dating we went out to dinner often, and shared more than a few bottles of wine. This slight change in her lifestyle over approximately 2 years caused her to gain a small amount of weight. Maybe 8-10 pounds on her 105-pound frame was enough to restart her hormones and periods. She began to change.

I noticed her becoming moody and anxious as well as not being very nice to me. I marked it off as stress from our upcoming wedding and honeymoon as well as normal work and life stress. Things were mostly fine and then one morning she called me from the emergency room saying she wanted to kill herself. This was all completely from left field. I had no idea what was going on.

My wife had been experiencing PMDD for a number of months at that point, and was doing okay at suppressing the symptoms. On this particular day she could no longer control the most powerful human chemical, hormones. Hormones are intensely powerful chemicals for both men and women. I would imagine you and I are at least similar in experiences as teen men. You most likely remember the intense desire for girls. Hormones, and particularly testosterone, were front and center in that. You and I could no more control that intense desire that my wife could control her desire to die due to progesterone and PMDD.

I will not bore you with many details, but she and I went through hell for 7 years before her PMDD was eventually properly diagnosed and treated.

PMDD primarily manifests as a mental disorder. It appears as if the woman is depressed, or anxious, or suicidal, or any number of mental disorders or combination of mental disorders. My wife was treated with every depression, anxiety, and mood compound known to man—with no positive effect. There were numerous bad side effects though. After 4 years it was obvious that it was directly linked to her hormonal cycle. For about 2 weeks of the month she was perfectly normal. Then every month without fail she would wake up as a person I didn't recognize.

She was suicidal, depressed, and most of all had the worst anxiety imaginable. We told every physician we could tell that her symptoms were hormonal and directly linked to her cycle. They gave her more mood drugs and ignored the hormonal aspect.

Finally quite by accident she saw a reproductive endocrinologist doctor. This physician not only recognized PMDD, she knew how to treat it appropriately. Some women can be treated successfully with birth control pills or psychiatric drugs. Some women can't take those because of side effects or other reasons. For some women there are only 2 cures for PMDD, either a COMPLETE hysterectomy, or menopause.

To prove that it was PMDD, the reproductive endocrinologist prescribed a drug named Lupron. This is a once a month or once every 3 months injection. My wife was to take the injection for 6 months. Lupron shuts off the ovaries and hence mimics menopause or hysterectomy. After a couple of weeks on Lupron my wife was back. It was completely obvious that what we had been telling many doctors for years was true. She had PMDD. No amount of willpower or mood drugs was going to fix or control my wife's complete [and biological] inability to tolerate progesterone.

Progesterone intolerance made her crazy and out of control, and controlled our lives for 7 years.

After 4 months the side effects of Lupron became debilitating, so the doctor referred my wife for a complete hysterectomy. That's when the real hell began. From the time between when the Lupron wore off and before the surgery could be arranged, my wife's ovaries rebounded. They produced massive amounts of hormone in an attempt to bring her absent hormone levels back into range. It was so bad I truly believed my wife would be arrested and put in jail before we could get her into surgery. I could tell you stories...

She finally had surgery on 24 December 2014. Literally the next day my wife looked at me and said, "I feel a calmness I've not felt in many years."

She was cured and our life together saved. This is our story.

I would imagine that right now you are experiencing the worst PMDD has to offer. Please understand that your wife can't will her PMDD away. She cannot "just try harder." She cannot simply "pull herself up" and "get it done" at times you might feel she should. I COMPLETELY understand. I'm sure I was not the nicest husband all the time when we were going through our hell. There were times I could barely maintain my sanity.

The only things that got me through was my love for my wife and knowing it was not her fault or choice. If I ever thought she could have chosen to act differently and she just chose not to, I would have left. Thankfully I knew it was not her fault.

From someone who has been in your shoes, I ask you to please understand your wife needs you more than ever. I know how completely maddening and frustrating it is to deal with right now. Get her to a reproductive endocrinologist who understands PMDD. Make peace with the fact that she may need birth control, psychiatric medication, or even a complete hysterectomy, and do what you can to get her the necessary treatment.

If surgery is appropriate do not allow a doctor to leave either of her ovaries. Ovaries are the problem.

As an aside, both my wife and I had our DNA sequenced for genealogy purposes last year. After that we found a website that would analyze our DNA and give us health information. It shows my wife has a known genetic mutation that makes her unable to metabolize her own progesterone.

I didn't need a DNA test to know that, but it was a nice confirmation of what we had experienced. 

Cat Stone's PMDD Crisis Guide Continues

Today is a follow up to last week's intro to Cat Stone's Crisis Guide to PMDD. Today Cat discusses several excellent ways to help yourself feel better when you are in crisis, courtesy of your PMDD. I hope everyone is able to take away at least one piece of advice that helps to ease the pain of your PMDD. Thank you, Cat, for sharing your thoughts with us.

You can find the intro to this guide either in last week's post, or at Cat's blog.

The Physical Realm of PMDD

This is an easy 'realm' to understand. It's the one we are most aware of. This is where PMDD is manifesting in most cases. There are many theories, from an imbalance or sensitivity to hormones, to a bug that lives in your system called H-Pylori. One thing that is common, is that it is hormonal, cyclical, and very hard to treat. Treatment is different for all women, and many have to try various medications and treatments before they find one that works.

Physical symptoms of PMDD are much like that of PMS. Bloating, painful breasts, cramps, heavy bleeding, back ache, digestive problems and insomnia, to name a few. Tiredness and lethargy is also a big problem, some days, it is hard to even get out of bed.

Weight problems can occur due to the imbalance in hormones, sporadic eating habits and lack of exercise. Acne is another troublesome physical symptom. I for one get new spots every time I ovulate or menstruate. These spots are hard, painful and more like boils. They take ages to clear up and often leave scars.

To start treating the physical symptoms (and in turn, improving your general well being) a plan of action should be devised. In it's most simple form, you should have a check-list that covers your body's basic needs. Maybe you can see it as a tool kit.

Exercise

We can actually take charge of this aspect quite easily. We can change what we eat and how much exercise we do. We have control over that. It is well known that exercise helps to relieve stress, keep the body healthy and can relieve cramps. It is easy to feel out of control when you suffer from PMDD, so by taking control over this aspect of your health, you can feel more in control of yourself in general. Sometimes, leaving the house before you blow is a good option. A brisk walk round the block will help you calm down, think, and work off some of that pent up energy. I'm sure most PMDD women go around like a coiled spring, just waiting to ping. This is energy waiting to come out. You could use it in a healthy way, or you can wait for the volcano to blow, inevitably hurting those around you with words or your own actions. Punching pillows helps... although in my house, (and I'm not proud of it) I am chief door slammer. It's the pent up energy that turns into rage. If you don't release this energy you will feel anger, you will feel rage, you will feel like fighting.

Try and incorporate some form of exercise into your daily routine. Getting outside really helps, maybe for a walk or bike ride. Join a Yoga class. This is the best way to learn to relax too, and become more sensitive to your body and what it's telling you. If nothing else, stick on your favourite album and dance and sing round the living room!

Stress

A special mention here goes to Stress. We underestimate how much stress can affect our body. Stress is not just in your head, stress affects every cell of your body. When we get stressed, our body reacts, putting a strain on our adrenal glands. In genuine situations, this reaction (known as fight or flight) can save our lives. When we are constantly stressing ourselves sick over our illness, weight, money, kids... we are abusing those reactions and leaving our bodies exhausted. Stress puts added pressure onto our hearts and can tie our stomach up in knots leading to erratic eating habits and IBS. You can overwork your adrenal glands, so they become so tired they don't function properly. This is when you health will really suffer and you will more than likely hit rock bottom. Your immune system will be lower, your 'feel good' hormones (serotonin), will be depleted and you will feel lethargic and depressed. Physical activity has been proven to help relieve stress, and should be a regular part of your tool kit.

Food and water.

The next simple tool to keeping our moods stable is eating, and drinking water. If I feel myself spiralling out of control, or I've just screamed at the kids for leaving a toy in the wrong place, I have to immediately check whether I have eaten that day. Our moods get worse if we don't eat. Obviously, try and make healthy choices, but it's better to eat than not, so if all you can manage is a piece of toast with jam, then do it. The aim is to try and keep yourself topped up with energy. Little and often is good, and will help keep your blood sugar levels stable.

Dehydration is another problem. If we aren't remembering to eat, we probably aren't drinking enough either. Tea and coffee and alcohol all dehydrates the body. Dehydration leads to mood swings, headaches and fatigue. This in turn can lead to more digestive issues such as constipation.

If we try and run on empty all day, we are setting ourselves up for a screaming rage at teatime, or a sobbing wreck at bedtime. We don't even expect our cars to go far with no fuel in the tank, but are quite happy to do it to our own bodies.

Sleep and rest.

Rest and relaxation should be the next tool in the tool kit. PMDD sufferers can have irregular sleeping patterns. Depending on what part of your cycle you are in, you may feel overwhelmed with tiredness and want to sleep all day, when at other times you cant sleep at all.

Getting plenty of sleep is essential to maintaining a stable mood. If you go to bed at 2am, and are then up for work or the school run at 7am you are going to be tired, whether you have PMDD or not, but add PMDD into that mix and you will have one very grumpy lady. You are more likely to snap, rant, cry, blow your top or worse, if you are tired. If you cant sleep, it is still important to rest your body. Try a long hot bath, meditation, or just lie down and watch a film or listen to music.

Maybe you like to read, or sew, or paint. Taking time for yourself and indulging in your favourite past time will help you relax. It is easy to deny yourself these little things, to write them off as unimportant, and say, 'how can I possibly deserve to sit here and enjoy myself when I'm such an awful person' or ' I cant take time out for myself, what about the washing up.. cooking tea... etc' If you like.. I'll give you permission! In fact, even better... I'll prescribe it!

Light.

Get out into natural light. The winter brings S.A.D. Seasonal Affective Disorder. If you are already sensitive to hormones, stress etc, you may find the winter becomes a hard time of the year. Low levels of light takes it's toll on energy levels and you may find yourself more depressed in the winter. If it's really severe, on top of the PMDD, you may find it hard to get up, stay awake in the daytime, or your depression and anxiety can worsen. Light boxes work well, but if you can't afford one, just make sure you get out in any sunshine (when we get it), put lights on in the house, and be kind to yourself. It is easy to assume your PMDD is getting worse in the winter, but it's more likely to be the added darkness of S.A.D.

Writing.

OK, so why would this be on the list? Because it's a physical activity. It anchors thoughts down on paper. Thoughts are like air, they flit and change. Writing things down, gets things out of you head and into the physical world. Keeping a diary, writing lists or post it notes helps you to keep track of your mind. Sometimes, making a plan on paper, is the difference to a day saved, or a day lost. Making lists will help you organise. Crossing off stuff on the list will give you a feeling of achievement. EVEN IF that list is nothing more than..

• brush teeth
• take kids to school
• wash up dishes
• go for a walk
• EAT
• have a shower

You will find you get more done by having a reminder list.

It is good to write out your feelings. If you feel weird about other people reading them, then keep a diary for yourself. If you feel you can share with other sufferers, even if it's under a false name, you should think about setting up a blog. Writing get things out of our system. The physical activity of sitting and focussing, helps us to become calmer.

Self destruction

If you suffer with PMDD you will know all about self destruction. My ability to cope with symptoms fluctuates. When I hit a low, and get ill, I forget about all the things I 'should' do. I spiral out of control and turn inwards. I become self-hating, self-destructing and down right cruel and hard on myself. Sometimes, holding onto sanity becomes too much in itself, and I let go. I free fall, I become some caught up in myself, I cant think about others. I can get really depressed and suicidal. I don't eat. I survive. I pass every hour in the day, waiting for bed, so I can try and start a fresh the next day. If I really want to hurt myself, I'll drink. Alcohol is not my friend, but I'll drink, because I hate myself, everyone must hate me, I want to hurt myself, I don't want this life, everything is wrong, why am I like this? I hate you.. and you.. why did I have kids? I'm a rubbish mother, I don't deserve them... Sound familiar? It will if you have PMDD.

Physical self destruction is something you can control. If you know you will drink yourself silly, then stay away from the bottle. If you are suicidal, then stay away from dangers, risks.. like driving for instance.

Remember that not eating or drinking, not looking after yourself, not allowing yourself rest time can all lead to a worsening of PMDD symptoms. You are in control of that. You must look after yourself. Don't allow yourself to self destruct. There is always tomorrow, the feelings will pass, and you will need your body to be there for you.

If you are feeling suicidal and have no-one to talk to, there is always the Samaritans here in UK on 08457 909090 or in the US call 1-800-SUICIDE. Or if you are a member of my Facebook group, there will always be someone around to help you through the bad days..

Liana's PMDD Website Finally Launched!

I’ve been working on a book about PMDD for the past year and a half. For a time I had an agent interested, but in the end, she said it was a niche book, (meaning it wouldn’t have mass market appeal) and she passed on it. One of the drawbacks, she pointed out, was that I don’t have any sets of initials behind my name, so can’t claim I’m an expert on the subject.

Funny, how living with something for forty years, day in and day out, doesn’t qualify you as an expert on the subject. But there you have it. The bottom line was I didn’t have the right credentials or a platform--also known as a ready-made audience just waiting to grab my book off the shelves.

Now, six months later, I can see why she said what she did. I’ve bought and read countless books about PMDD and women’s hormones in general, and quite frankly, the information is already out there. Some of it highly technical, some of it garbled and distorted along the way, some of it just plain off-the-wall wrong, and some of it a thinly disguised marketing ploy to sell drugs or supplements and such, but overall, the information you need to manage your PMDD is out there.

On the other hand, you can go to the loops and forums and blogs, and read heartbreaking stories of women crying out for relief from their PMDD. Women with their lives and relationships in chaos. Women considering, planning, and attempting suicide because of it.

My question was (and is) why isn’t group A, those who suffer from PMDD, connecting with Group B, those who write about it and have information that would help women to understand and manage their PMDD?

I’m all about connections, networking, and relationships, so I’ve put my book on hold and shifted my focus to create this blog and a matching website to bring the two together. The website launched this week and is very incomplete, as I’m still writing the content for it, but I wanted you to be able to finally see what I’ve been working on these past few months and where I intend to go with it.

How did this all of this come about? Well, one day in April (a few weeks after the agent rejected my book proposal) I’m walking at the Y, participating in my 100 miles in 100 days challenge, just going around in circles around the track and letting my mind wander, when all of a sudden an image of a water lily comes to me, fully formed, along with the words, Living on a Prayer, Living with PMDD.

I don’t know why that happened, or how, but when I stopped to think about it, I realized that’s what it’s like for me, living with PMDD. Some days I feel like all I’m doing is living on a prayer, getting through by the grace of God. If nothing else in the past ten years, I’ve learned nothing short of my faith is going to get me through this debilitating disorder that can and does lead other women to attempt suicide.

Anyway, I finished my walk, then went home and hit the internet, looking for pictures of water lilies. I found the perfect one three pictures in, but of course (being slightly OCD), had to keep looking to see if there were any better ones available.

There weren’t any better ones, but there were a ton of options. And so my idea began to expand. I contacted my favorite web designer, and she said to send her the pictures I’d chosen and we’d come up with something. In the end, I think we’ll use all the pictures I chose, because to me, each one represents a different facet of having PMDD.

But once that was done, all the pictures were chosen, I wanted to know…Why a water lily? I’m not really into flowers, and don’t like the water at all, especially dark, murky water, so I looked up the symbolism of water lilies.

This is what I discovered: Lotus: Water Lily: The Lotus flower is symbolic of rebirth, but in addition to its religious meaning, the lotus is also a symbol of all that is true, good and beautiful, representing good fortune, peace, and enlightenment…In modern times the meaning of a lotus flower links closely with religious symbolism and meaning. A lotus represents life in general. As the lotus flower grows up from the mud into an object of great beauty, people also grow and change into something more beautiful. So the symbol represents the struggle of life at its most basic form.

Lotus flower symbols are also popular for people who have gone through a hard time and are now coming out of it. Like the flower, they have been at the bottom in the muddy pond, but have risen above this to be an object of beauty or represent a life of beauty as the case may be.

Thus the lotus flower or blossom can also represent a hard time in life that has been (or can be) overcome.

I’d say that captures my (or any woman’s) struggle with PMDD perfectly.

Take care and God bless, and may your week be a happy one.