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.

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.

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

Five Secrets for Surviving PMDD

Sometimes when we’re on the edge, a little dose of truth is all we need to keep from toppling over. Here are 5 secrets that can make surviving PMDD a lot easier.

1. Resistance creates suffering. Yes, PMDD causes unbelievable discomfort and mental agony. But were you aware that when you resist that discomfort and agony, you are actually creating MORE of the same? The human race is quite masterful at wanting things to be different. We’ve gotten quite adept at overanalyzing, strategizing, manipulating, denying, oppressing, and yes, even brooding over what is. But what is, still is. With or without all the energy we expend pushing things away, blaming ourselves or others, and replaying events of the past or imagining disasters in our future, reality is still reality. The trick, and I tell you true, is to use that very same energy you’ve been wasting on what you cannot change and divert it into new channels that actually make you feel better. It’s so flippin’ simple and obvious, and yet doing it takes tremendous energy and refocus.  

2. Build your energy. Okay, so now you know. You’ve got to spend the energy you have differently and also increase your energy enough to be able to break out of old habits. So, you have to identify all the ways you waste or leak energy. It could be through crappy relationships, through poor diet, not getting enough sleep, and the less obvious ways of stuffing emotions, harboring negative thoughts, or denying yourself as a matter of habit everything you truly want in life (by, for example, not even asking for it!). And here’s another tip: the more comfortable you can become with your discomfort, the more energy you will reserve and build. When you want to flee or fight, but there’s no imminent threat, stop. Feel. Breathe, woman! I promise it will pass. 

3. You don’t need to fix yourself. I know. It’s hard to believe. But it is true. You don’t NEED to be any different than you are…no matter what you or anyone else has been telling you. I know PMDD sucks. I know it can turn you from sweet and loving to bitter and hateful in under 3 seconds. But the thing is, neither of those personalities is you. You are a deep and beautiful mystery created by Life, infused by life, and guided by life. Flawless! Next time you get the message that you suck, duck! Let that bullshit ride the airwaves right over your head and out the window. There’s nothing you can do to change what is until Life decides it’s time. And then all you have to do is not resist! So until then, dream a better life but without the underlying judgment that says, “I am not doing enough.” 

4. Let yourself off the hook. The nature of PMDD ensures you’re going to have bad days. Why beat yourself up about them? Why bash yourself with judgments and shame or guilt over what you thought or felt or did? Make reparations if you can, of course. But it is actually a complete waste of energy to chastise yourself for losing your temper or getting depressed again. It is useless to tell yourself to get a grip or get over it. And you certainly wouldn’t appreciate hearing that from someone else, so why do it to yourself? Accept that in every moment, you unquestionably do the best you can. If you could do any better, you would. Allow yourself your mistakes, forgetfulness, reactions… Whatever thoughts or feelings or emotions you experience, they really aren’t personal. They pass and evaporate, eventually. They aren’t YOU. 

5. Stop believing your complaints. PMDD causes sufficient misery to provoke numerous complaints. You’ve earned the right to complain. So if you need to vent, vent! It’s healthy! But that doesn’t mean you have to believe your complaints or use other people like sponges to absorb all of your problems. Whatever you need to express, do it with people who aren’t going to buy into and reinforce the story. But take care you don’t reach out to people who are going to devalue your experience either. What you feel is real. What you believe about it…not so much. It is a delicate balance, and it starts with you. Recognize that sensations arise in consciousness. You will never be able to control them, so don’t waste that precious energy trying so hard. Instead, learn to doubt them. Learn to see them for what they are. You’re not broken, doomed, hopeless, or useless and life hasn’t handed you an impenetrable bum deal. The truth is, life is so much easier than we make it…if we’re willing to let it be.

Liana's note:  The above guest post was written by the blogger Cheekyminx. With her permission, several of her posts about PMDD are being featured on this blog. To find out more about her work as a PMDD Advocate, please visit her Facebook page, PMDD Life Support.

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 Quote of the Week

~I hate that none of my friends and family really know the demons I battle every month and that all my hard work during my good days barely seems to count because of my bad ones.~

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.  

Readers Speak Out: Advice for Partners of Women with PMDD

Today I uncovered another gem of wisdom from a reader on how to approach your partner's PMDD.  Rather than leaving it buried in the comments section of another post, I've decided to feature it here:

I just found this blog searching for something to help my husband know what to do with me. I feel better now, but I fear I'll regress and we'll struggle again as a family. I have PMDD. I say DO NOT bring it up when she is at her worst. She is completely irrational and doesn't want to answer stupid questions or talk about how she is feeling. [In that moment] it seems so obvious to her that you should know how she is doing. Don't bring it up on a date or otherwise special time between you two. It is better to ruin a good day or week to get her help, than to keep living like how you are and end up divorced.

First, you need to get your wife medical help. When you have an opportunity to talk—not in public—ask her if she's ever had PMS. She may not have realized her moods are associated with her cycle. You're either going to get a "Yes, dumb***" answer or a "No, not really, I don't think so."

Depending on how that goes, tell her you've done some research, you think her moods might be associated to her cycle, or, if she knows she has PMS, that it might be something more serious. Tell her about PMDD. Read her the symptoms. Ask her if this is how she feels sometimes. Feel bad for her, say you're sorry she has to endure that every month. Let her know there is help available.

I know it sounds insane. I know you shouldn't have to put up with it. I also know how well I'm doing now and wonder how much better last year could have been for my marriage if my husband would have reacted to me differently. If he could have said, "How are you doing? Not well? Let's get you to the doctor," instead of "You're so mean and I don’t have to put up with this." I think I would have felt better. I was already on an antidepressant. It wasn't working.

What I need to feel better is a new prescription and a husband who will back off when I'm irritable and take care of the kids. When I have a bad day, I need him to think, "She's mad, hmm, let's look at the calendar, yep, she's pre-menstrual, I'm going to leave her alone, not mention PMS, and take care of the kids until she feels better."

It might be a few hours, it might be a few days, but it won't be a few weeks like it was last year when he was mad at me for having a bad day; then I felt worse, then there was a fear he'd leave me. I get it, I wanted to leave me, too, but women with PMDD, I'll speak for myself at least, need to feel wanted and loved and worth it to help.

So that is my advice, stranger. Ruin a good day to get her the medical help she needs. Say, "I took next Thursday off work, would you like me to take you to the doctor?" If you have kids, arrange babysitting. It's so hard for moms to find an hour to go to the doctor, especially if she doesn't feel she's worth helping. Even if it's not PMDD she has, make sure she gets bloodwork done. They should be testing her thyroid to make sure there aren't issues there.

Either way, good luck, and from the wife's perspective, thank you husbands who stick it out and deal with us. Some of these marriages seem beyond repair, but husbands can do so much to help. Think of how she is doing and what you can do to help, even if that means just leaving her alone for a bit. She’s not rejecting you. She feels like s***. Unless she comes to you, your touch will be repulsive. It’s not personal, it’s just how she feels. Know that she cannot help how she feels when she is pre-menstrual. For me, I feel angry, tired, sad, and irritable so I am distant to try to protect the ones I love most (from me).

Perhaps your wife [doesn't] care so much if she is mean, but I care. I bet deep down she cares too because she loved you enough to marry you and doesn’t want to be mean to you. You don't have to understand it, you won't ever. You just have to love her through it. Hopefully she's worth it to you.

Welcome to the NAPMDD Conference, Where The Real You Is Welcome

Two weeks ago today in Colorado, the first ever National Organization for PMDD (NAPMDD) Conference and Expo ended amid hugs, kisses, smiles, laughter, and tears...many, many tears.  Tears of hope, tears of joy, tears of relief, renewal, exhaustion, and—for the first time in what I would venture to say almost every attendees' life—tears of pure recognition and acceptance. 

For Acceptance—in addition to Hope—was the overall theme, message, and atmosphere of our time together in Denver.

While leading up to the conference many jokes were made in the PMDD community about what could happen in a room full of angry women with PMDD, the opposite was our reality.  There was no need to be angry because we had all "been there."  
Empathy was the reigning emotion of the weekend, because we understood each other—all too well.  Not just our emotions, but the process and pitfalls, jargon and results of the disorder.  I'm in Day 5.  Day 15 here.  I've been on six different drugs in ten years.  I'm on progesterone therapy.  I'm getting a divorce.  I'm thinking of getting a hysterectomy.  I hate my family.  I'm taking (name your medication).  I've been diagnosed as bipolar.  I think about suicide every month.  My doctor told me to "Just go shopping."

And where else could you go and tell a group of strangers about the color and condition of your cervix?  Better yet, splash pictures of it onscreen, then ask if anybody has questions?

I loved the openness of the conference.  Information was shared with total professionalism and respect, but also with a dash of humor when warranted.  The program provided by the speakers was invaluable.  The sessions sparked conversations about subjects such as nutrition, detoxification, inflammation, self-care, self-love, wellness, and healing.  Learning to live your cycle rather than fight it; learning to work with it rather than against it.       

So many options; so many choices.  But all with the same goal of wellness.  For that alone the conference was huge success.  (I'm just writing about it now, because I took a two week vacation to travel out West afterward.)  Kudos all around go out to Amanda and Melanie and Elizabeth and their well-organized team of volunteers. 

But what struck me most about the event—in addition to the great food, hotel, conversation, and stellar line up of speakers—was how much love and acceptance everyone shared. 

Yes, people cried throughout the weekend, in the audience, in corners, in hallways, on couches, and at the podium—but that was okay.  For the first time in history, women with PMDD (and their partners) were allowed the safe space to "be ourselves" in public.  Nobody had to go back to their room and suffer alone.  Nobody had to hide in the bathroom to cry.  Nobody had to excuse themselves because they made other people uncomfortable with their messy emotions.  Our tears and fears were welcome.  Our conversations were real.  Our hopes, dreams, sadness, and anxieties were out there for everyone to see.

And it was wonderful.  Freeing.  Empowering.

I'm sure the energy of welcoming acceptance that flowed throughout the conference will help to sustain attendees for many months to come.

And that is what NAPMDD is all about.

Support.  Encouragement. Acceptance. 

Hope.

In sum, all I can say is while the educational information received at the conference was by far the bargain of the year, the warmth, friendship, and empathy I experienced at the NAPMDD conference was...

Priceless.

*For those who were unable to attend the conference, please check the NAPMDD site for links to free videos of the speaker sessions. 

PMDD, A Conversation with Someone Who KNOWS

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

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

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

Hello, Liana, 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

You are not bad.

You are not crazy.

And you are not being punished for any sins.

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

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

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

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

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

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

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

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

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

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

Liana

Holiday Treats for Those with PMDD

Two Christmas treats I've uncovered this month...

The first is the best overall medical write up of PMDD I have ever read, and I do mean ever, starting with the first line where it defines PMDD as "a diagnosis to indicate serious premenstrual distress with associated deterioration." 

What I like about this write up is that it DOES NOT, anywhere, or anyplace, or at any time, refer to PMDD as a "more severe form of PMS," which PMDD most definitely is not.  You can have both PMS and PMDD at the same time, but they are not interchangeable, as so many articles and essays and websites either claim or imply, and they are not the same disorder, with one simply being a more severe version of the other.  The fact that so many PMDD resources say they are only muddies the already murky waters of PMDD, leaving everyone searching for help more confused than ever. 

So...I heartily recommend that you read this emedicine Medscape article and learn the latest about PMDD.  I'm sure there's information here you haven't read before.  And if you have just recently discovered you have PMDD, there is no better place to start your research than with this overview.

The second treat I've uncovered is this delightful free PDF entitled Let's go menstrual! by Miranda Gray. This 34-page PDF is a super easy read that helps us to understand our monthly changes, and provides a great way to enjoy and take pride in (rather than dread and loathe and curse) your menstrual cycle.  Ms. Gray breaks our cycles down to four seasons.  PMDD women would benefit the most from the section entitled The secrets of the Autumn and Winter phases.  

Seriously....this PDF "gets" what it's like for us, provides excellent tips and resources on how to cope, and finds a way to put a positive face on our periods and PMDD.

Couldn't we all use a little positivity going into 2014?

So let's welcome the new year and our new beginnings and successes with these two excellent resources for women with PMDD.

Is the Pill Really the Answer for Your PMDD?

Whether you're taking the Pill for contraception, or for your PMDD, you need to read this book.  If you can't afford the book, then read Holly's blog of the same name.  Make sure you are making an informed choice when you pop that pill in the morning for your PMDD.  

To quote author Laura Werschler, who wrote the foreword for Holly Grigg-Spall's book:

"Sweetening the Pill explores and challenges the ways in which the pill and other drug-based contraceptives damage women’s health, threaten our autonomy and thwart body literacy. What we don’t know about our bodies helps pharmaceutical companies “sell” their contraceptive drugs, and keeps us “addicted” to them... Prescribing the pill, or other forms of hormonal contraception, has become, in the minds of most health-care providers, the “standard of care” for being a girl. It is all too common to subjugate a girl’s menstrual cycle to synthetic hormones that superficially “regulate,” but actually suspend the maturation of her reproductive system. And for many girls, the use of hormonal contraception continues well into their 20s, without awareness of what might be or has been sacrificed."

This sacrifice can include, but is not limited to, your mental and emotional stability, both of which are defining symptoms of your PMDD.

For more information, go here, or here.  Or even here.  Learn about what you are putting into your body.  You will be surprised at how many questions these resources will be able to answer.

PMDD Wars: Progesterone vs. Progestins: Part 1, Progestins

There are many controversies surrounding PMDD, and one of the biggest is the use of progestins and progesterone to help mitigate the symptoms.  I think someone out there must be marketing progesterone for PMDD pretty heavily, because of all of the questions I'm getting on the subject.  So I'm going to back up and start at the very beginning, assuming you know nothing about progesterone and progestins, like I did when I first started researching this topic. 

First of all, we are talking about two different things.  Progesterone and progestins are not the same.  Progesterone is produced naturally in your body; progestins are synthesized to mimic what progesterone does for your body.  It's important that you do not confuse the two, and when reading articles or advertisements or results of clinical studies on hormones, it's important that you know which one they are talking about--natural progesterone, plant-based progesterone, or synthetic progestins, also called progestogens.  

Somehow it all gets lumped into being called "progesterone", and I think this is a big part of where our confusion as consumers comes from.

So:

Progesterone is what your body makes naturally

Bio-identical progesterone - a synthetic progesterone made from plant sources that is biochemically similar to those produced by the body

Progestins  - synthetic progesterone-like chemicals structurally different from what your body makes

Progestogens - synthetic progesterone-like chemicals structurally different from what your body makes

If you read nothing else of this post, please make sure you learn the above distinctions.

Because of the enormous amount of information on progestins alone, I will not get to the information on what is termed bio-identical progesterone today.  If that's all you want to read about, you will have to wait for a different post, but in the meantime I do encourage you to keep reading, as what follows may answer some of your questions, and may help to explain why you feel the way you do.  

Now, back to the basics:

Progesterone is a hormone naturally secreted by the ovary in the second two weeks of a woman's menstrual cycle.  Both bio-identical progesterone (synthesized from plant sources) and progestins (synthesized from chemicals) can also be taken in pill form, the latter by women taking birth control pills and hormone replacement therapy pills.  Progestins can also be used to induce a menstrual period in the case of stopped menstrual periods, or to regulate abnormal bleeding in the case of heavy blood flow problems.  Progesterone is also used in high doses for women with infertility problems and to prevent miscarriages.

There are several different kinds of progesterone being marketed today.  Today's post is about  progestins, the synthetic progesterone-like chemicals (also called progestogens) which bind to the body's progesterone receptors and function, for the most part, just like progesterone.  But because they are chemically different from our own natural progesterone, they have side effects.

Progestins were originally developed because they could be absorbed into the blood when ingested in pill form--this was before the development of micronized progesterone capsules. 

Progestins are only available via a prescription. You find progestins in birth control pills, also called oral contraceptives.  There are two main types of birth control pills: combination pills and progestin-only pills.  Most pills are available in both a 21-day or a 28-day pack, with the 28-day pack containing 7 placebos, or inactive pills, taken on the days you would normally have a menstrual period.  Combination pills are the most popular, due to the well-published side effects of synthesized estrogen-only therapies, and contain both synthesized estrogen and progestin. 

However, all combination pills raise the risk of heart attacks, stroke, and blood clots.  That risk rises if you are either smoker or over the age of 35.  Other factors, such as being obese or having a family history of heart disease make these blood clots more likely, therefore the FDA advises women against taking any combination birth control pills if you have a history of blood clots, heart attack, or stroke. 

One type of birth control pills carries a higher risk of deep vein thrombosis or pulmonary embolism (blood clots that start in a leg vein and travel to the lungs) than others.  Those are the pills that contain the ingredient drospireone and include Beyaz, Gianvi, Lornay Ocella Safyral, Yasmin, Yaz, and Zarah.  According to a post in the blog re: Cycling, as of April, 2012, pharmaceutical giant Bayer (makers of Beyaz, Yasmin, and Yaz) faced 11,300 lawsuits from women who have been seriously injured and family members of women who have died after taking Yaz or Yasmin.  In December of 2012 the company reported they settled the first 3500 cases with a total of $750 million in payouts.  As of this date, the latest case filed, November 28, 2012, is from a woman in Oklahoma who took Yaz for only two months, ten years ago, and developed deep vein thrombosis.

That said, the following side effects, usually severe or sudden, may be caused by blood clots:

Headache or migraine

Loss of or change in speech, coordination, or vision

Numbness or pain in chest, arm, or leg

Unexplained shortness of breath

 More common side effects of progestins include:

Changes in vaginal bleeding

Light bleeding or spotting between withdrawal bleeds

Symptoms of blood sugar problems (Dry mouth, frequent urination, loss of appetite, or unusual thirst)

Mental depression

Nausea

Skin rash

Unexpected or increased flow of breast milk

Abdominal pain or cramping

Breast tenderness

Bloating or swelling of ankles or feet

Blood pressure increase

Dizziness

Headache

Mood changes

Nervousness

Unusual or rapid weight gain

Acne

Brown spots on exposed skin

Hot flashes

Loss or gain of body, facial, or scalp hair

Loss of sexual desire

Trouble sleeping

Certain doses of progestins may also cause a temporary thinning of your bones, which is a factor in developing osteoporosis, but on the other hand, it has been found that progestins *may* offer some protection against osteoporosis in postmenopausal women.  Smoking, drinking alcohol, and taking or drinking caffeine can also thin your bones, so be aware of the added stress you may be placing on your bones by taking progestins.

Progestin-only pills (also called the mini-pill) are most commonly used by nursing mothers, women at risk for blood clots, and other conditions that prevent them from taking estrogen.

Combination birth control pills come in different phases, depending on whether the level of hormones in the pills changes throughout the month.  Monophasic (one phase) pills contain the same amount of estrogen and progestin in all of the active pills.  Two-phase pills change the level of hormones once during the menstrual cycle.  Three-phase pills change the levels of hormones every seven days during the first three weeks of pills.  Then you have the inactive pills for the fourth week, which is when you get what is called a withdrawal bleed.  It's not to be confused with a period.  You bleed, but you don't have a true period.  You can't, because you didn't ovulate.  Four-phase pills change their hormone levels four times per cycle. 

Is it safe or healthy to skip periods?  If you aren't taking oral contraceptives, you need a period after ovulation to shed the lining that's built up in  your uterus in preparation to receive a fertilized egg.  But when you're taking birth control pills, they suppress ovulation, so no eggs are released, and therefore your uterine lining doesn't build up.  The reason you bleed is because of the week of inactive pills in your birth control packet.  And sometimes you might not bleed at all. 

I am of the opinion that it's not a good thing to chemically suppress any natural body functions, but every woman has to decide for herself.  More information on this (so that you can make your own informed decision) can be found at the blog, Sweetening the Pill.

So, in addition to regulating your menstrual cycle by suppressing ovulation, and treating women with no period (amenorrhea) in an effort to bring about a period if possible, progestins are used:

To prevent estrogen from thickening the lining of your uterus

To treat pain related to endometriosis

To help treat cancer of the breast, kidney, or uterus—as progestins can stop the growth of an estrogen-fed tumor

To help prevent anemia (low iron in blood)

and, in high doses:

To stop heavy menstrual bleeding

To help a pregnancy occur during egg donor or infertility procedures

and

To help maintain a pregnancy when not enough progesterone is made by the body to do so.

So both progesterone and progestins are tricky things:  High doses can either start or stop menstrual bleeding, and can be used to help support pregnancy, while low doses can prevent pregnancy from occurring.

However, there have been some reports that high doses of progestins during pregnancy may cause birth defects in the sex organs of a male fetus, and some progestins may cause male-like changes in a female fetus and female-like changes in a male fetus. 

Hormones are powerful things, ladies, so buyer beware.

Before taking progestins, you should also tell your doctor if you have or have had any medical issues with the following, either through your family history, or having experienced these issues yourself, as progestins may make these conditions worse:

Allergies (to medicines, food dyes, preservatives, or animals)

Asthma

Epilepsy

Heart or circulation problems

Kidney disease

Migraines

Bleeding problems

Blood clots

Breast cancer

Deep vein thrombosis

Heart attack

Liver disease

Pulmonary embolism

Stroke

Blood clots in the veins

Breast lumps or cysts

Diabetes

Memory loss

Vision changes

Note:  Just as each woman is individual in her hormonal makeup, each synthetic progestin has a different side effect profile, due to the various formulations, so it is hard to pinpoint which progestins will cause which symptoms in which women.  I'm just trying to cover all the possibilities here so that you can see where, if at all, you fit in. 

Proposed off-label uses for progestins include treating hot flashes (interesting, since they can apparently also cause hot flashes) and polycystic ovary syndrome (PCOS).  An off-label use is one that has not been approved by the FDA, but once a drug has been approved by the FDA (in this case, birth control or hormone replacement therapy) to treat a specific condition or disorder, doctors may then prescribe it as they see fit.  Much marketing is done in the area of off-label use for many drugs touted as PMDD symptom relievers, and several drug companies have been reprimanded and fined by the FDA for promoting non-approved uses of their drugs to treat these symptoms.

We'll talk more about that next time.