CIZE Does Matter - A PMDD Exercise Challenge

For todayʼs guest post, please welcome The Healthy Hackress.  Her PMDD thread will be ongoing, and I will be happy to post updates here, but if you don't want to wait for me, please follow her journey with PMDD and exercise either on her Facebook page or blog.  She also has a lot of great ideas for—What else?—healthy hacks!  Well worth checking into, even if you donʼt have PMDD.

Recently I was diagnosed with PMDD. Here is my journey from diagnosis, to treatment and more importantly, how Cize by Shaun T gave me my life back.

According to research, PMDD affects 2-10% of women during their reproductive years. It’s common. Very common – but misdiagnosed and misunderstood. Thousands of women right now feel at a loss and don’t truly understand why they don’t feel “normal” or worse, why their life literally falls apart starting two weeks prior to their cycle. Isolation, fear and shame are all too familiar feelings of women suffering from PMDD. I am one of them. Do these symptoms seem familiar? Is it you or someone you love?

PMDD is a mood-based hormone disorder that is cyclic and reoccurring. Sounds like a death sentence, right? Imagine, every single month you know “ITʼS” coming. You’re not sure why but two weeks prior your cycle you’re all over the place. It's like ADD meets Bi-Polar for a 2 week fling, then they break up…until next month. You’re clingy. You’re crying one minute, screaming the next, then sitting quietly, unsure of WHAT just happened. Feeling a bit like Norman Bates with those “episodes.”

Seriously – that’s PMDD. If you have a significant other and they haven’t left you already (because, PMDD truly affects all relationships) – then you’re lucky. They feel it too – but they don’t understand.

You don’t need to wait for a medical professional to confirm a diagnosis of PMDD – it’s self- diagnosable. You track your symptoms and report to your doctor. This is a great tracker that you can use from The National Association for Premenstrual Dysphoric Disorder [now known as the Gia Allemand Foundation]. Basically, track how you’re feeling before, during, and after your cycle (anxiety, mood swings, irritability, sleep issues, etc). Your doctor is going to ask you to do this – so, if you go in already prepared you’re that much further ahead. This process took me 10 LONG months. Each month I tracked my symptoms so when I went to the doctor they couldn’t turn me away and just tell me, “Everything is normal.”  If you’re living with someone or have close friends/family – ask them to track for, or along with you. When you’re in “IT” – it’s very difficult to emotionally and mentally report back. Having someone point certain behaviors out can be hard – what I mean is, someone is going to tell you the RIGHT thing at the WRONG time – because, you’re not mentally/emotionally grounded. Try to remember – you NEED to hear it. Their unbiased observation is going to provide necessary data for yourself and doctor when treating YOUR PMDD.

Once I had all my data I made that initial appointment and received confirmation that Yes, “It’s PMDD.ˮ Finally, things fell into place and I could breathe a huge sigh of relief knowing I wasn’t crazy. Finally, someone was listening, and everything I had felt was real & important. I had done my research going in. I knew how PMDD was treated. I had questions on top of questions. I needed answers. After all, my children needed their mother and I needed myself. They started me on Yaz—reportedly the only over the counter birth control approved for PMDD. Yes, I know—bad reviews, lawsuits, etc.—BUT, when you’re in the Pits of Hell in the middle of a fight between Bi-Polar and ADD—you’ll try anything to destroy their toxic relationship. I tried Yaz. After my 2nd week both myself and my husband noticed a huge difference. I was less spacey – more clear in my thoughts and finally felt as if I had control. Did I still have anxiety at times? Sure, but mentally/emotionally I could WORK through it opposed to the constant feeling of drowning. Did I have irrational thoughts? Yes, but I was able to work through them. Yaz gave me some mental clarity back. Unfortunately, I developed an irregular heart rate at 145 – even when at rest. Physically, I was breaking down. After an ER visit and a couple visits to the Dr. – I came off of Yaz.

Then I tried Zoloft. *sigh* If you know me – I’m ALL natural—from giving birth naturally to treating headaches with almonds. I’m not huge on medication unless it’s NEEDED. “Well,ˮ I said to myself, “I have to try everything so I know at the end of the day – I did my best.ˮ  3 days later I caught myself staring out my window watching birds & not caring that I was sitting there staring out a window – Kathy Bates from Misery anyone? The things that once made me laugh no longer put a smile on my face. I wasn’t OK with that. I knew I wasn’t ME – bubbly, personable, caring – I wasn’t me. I was only on 25mg and that’s not even the therapeutic recommended dose of 50mg for Zoloft. I then safely decreased (with the support of my Dr.) to 12.5 and discontinued it. Wasn’t for me. That isn’t to say that someone else may not greatly benefit from SSRI’s.

Currently I’m on a different form of HRT (Hormone Replacement Therapy) – Continuous Birth Control, which would halt the dramatic changes in hormones and provide balance. I will need to report back on this as this is my newest form of treatment. Along with the birth control I’m taking a Vitamin B Complex, Daily Multi for Women – I Prefer Rainbow. Natural. Plant based. Also, I’ve added 2 TBSP of Ground Flax Seed to my oatmeal in the morning. According to research, Flax Seed can mimic the female hormone Estrogen and provide other benefits such as relief from Depression. In my search for Vitamins and Minerals that could/would provide potential relief from PMDD – I came across some great work by Dr. Mark Hyman – He’s truly fantastic. I’m a Certified PLATE by Zumba Instructor and he provided some of the training. Here is a great article he wrote with vitamins and remedies in helping to relieve PMS/PMDD.

Now, you ask “Why does Cize Matter Again?” I woke up one morning very early. I couldn’t sleep and was just DONE with doctors not knowing how to help. Done with being turned away. Done with being told “Everything is normal.ˮ I was just done. From one failed medication to another I had it and wanted/needed to take control back. Then I watched the infomercial for Cize. I asked my husband to get it for me because I was willing to try anything to get my new self and leave my old self behind. He did. I was nervous and hesitant. After all, I had tried Insanity and Shaun T delivered. He kicked my A$$ and that felt good. This time around I knew I needed something a bit more “me” – this was it. Cize gave me that. From the minute I played the first day I was hooked. Losing weight and becoming a size 5 was no longer relevant. Waking up everyday knowing I could beat my anxiety became my goal.

Each day it became easier. I felt a bit better. I still had the PMDD symptoms – but mentally, I felt stronger than ever. Shaun T will never truly understand what he helped me get back. I’m in week 4 and I feel better. I look forward to my routines with him because I know he’s right there telling me, “You got this.” I know missing a day isn’t acceptable. Each day Cize is my Zoloft, except I don't suffer from any side effects – like staring out a window for 20 minutes or losing the ability to laugh at everything that once brought a smile to my face.

Some women may need some additional SSRI as a support. Please don't take my experience as true for everyone. Don't be ashamed. Each and every woman needs to find THEIR treatment because PMDD for one is VASTLY different for another.  Listen to your body and remember – doctors aren’t always right. Be your own doctor and researcher. Keep a journal of symptoms and never, ever – stop fighting.

This thread will be ongoing. I will keep everyone posted on my 60 day Cize challenge that I intend on making a routine for the rest of my life. Each day I laugh more, feel the fight harder and see the results I’ve been looking for all along. Mental and emotional health are far more important than your physical appearance. That will come in time. Nourish your soul and show yourself everyday that you matter – release those feel-good hormones because exercise and movement is truly the first line of treatment for any disorder.

Don't be ashamed to share your story, ask questions and or seek support. If it isn’t a fight and doesn’t hurt getting it, it isn’t worth it. Fight hard. Remember, it isn’t about the scale, it’s about how you feel!

If you know someone presenting with PMDD symptoms. Reach out. Don’t push them away. Be a support. Share this blog. The biggest and most deficient need of women suffering from PMDD is support. The National Association for Premenstrual Dysphoric Disorder provides great support.

Thank you Shaun T for being there & giving me the strength to fight back.

 ~The Healthy Hackress

The Voices of PMDD - Battling the Darkness

Today's powerful guest post was written by Amanda Van Slyke, Founder and Editor-in-Chief of Flurt Magazine.  For more information, please visit Flurt's Facebook Page.

Every month around this time the darkness swallows me up. It seems to happen in an instant, where I previously felt more creative and fulfilled than I've felt in a long time. Just before the lights go out, I climb mountains of work that I've been trying to reach for weeks. I write essays full of passion and reach out to others for emotional connection. I walk down the street smiling ear to ear, thinking that maybe – hopefully, this time – I've escaped the torture I see others endure online. They post about how they can't do this anymore – about how it happens every month, and every month like clockwork it's the same thing – feelings of hopelessness, loneliness and isolation. But I am happy. I eat well and do yoga and meditate and run – everything you're supposed to do to get rid of the darkness. I think that if only people did what I did, they'd feel just as great as I do. I am the exception to the rule.

When I was younger, I came to a point where I'd felt like I had already died. I was a shell of a person, barely leaving my bed because of the fatigue and depression, stuffing my face with whatever temporarily took away the pain. I barely escaped to the west coast to get away from the darkness before it swallowed me whole – and I saw a lifestyle that could make me feel better. I stopped drinking, stopped eating sugar and dairy and gluten – and I know how you all feel about gluten, but it worked. For the first time in my life, my face cleared up. My bloated belly flattened. When I filled my body with fuel instead of poison, my energy started to come back. My depression started to lift. I could feel the oxygen coming back into my bloodstream. The more I took care of my body, the more I saw God through me – and I was an atheist.

I know that sometimes people take medication – SSRIs mixed with therapeutic conversation – and believe me, I've been on so many pills I considered swallowing them all at once. But pills took away something far deeper than the darkness – they took away my ability to feel your toes tingle and your whole body remember what spirituality feels like. And for me, I'm not willing to give up my God – the one that speaks to me through my own moans and screams. To me, feeling that numbness inside me might as well as be the death of me. So I tapered off my medication – well, after I tried to go cold turkey, and my boyfriend almost broke up with me. When I finally felt I was myself again – the one I had been searching for and didn't know could exist – I wanted everyone to know about the revolution.

And the revolution came in a plant based crusade. I felt like I had finally found a cure for the darkness. I went two years without eating meat, and I was so skinny my panties fell to the floor. But I still said that I was part of the movement. I shared photos of my recipes online, and talked about how well I was doing. But away from the limelight my diet fluctuated just as much as much as my mood. Just like I'd tapered off my medication, I tapered off fuel for my body, replacing it with poison – processed foods that were easy, thinking that just a little bit of junk food would make the pain go away. Because the pain never did, regardless of what I was eating. If I gave in and reached for the poison, it would spread throughout my body and the pain would inflate my belly and the lights would go out. And then I would say, "Screw it," like the people online that I thought just needed to be more like me.

I know now the darkness is inevitable. I know I need to do my best to choose the light – and that I won't choose it every day, nor will anyone else – even the gurus on Instagram who post photos of food I don't have the money to make. Because the darkness isn't a place where you only go when you're weak. Diet and exercise and medication is for the privileged – and I'm privileged enough – but sometimes I don't have much money for food or the will to leave my apartment, so I reach for something I know will be easy but harder in the long run. And then I spiral down – feeling hopeless, lonely, and isolated – where my only friend is the poison that I know will kill me. Because people die from this.

The darkness leaves you feeling like there's a hole where your heart should be – where you try to fill it with things to make the pain subside. Junk food, alcohol, sex, and drugs. But the real misery comes when you realize these things are never going to be enough. It comes from the knowledge that only finding self love can fill that hole – and trying to love yourself is hard when you never did. Once you see it's just you and the darkness, you can either stay up til morning or go to sleep. And while it's easy to say some are weak for not fighting, I don't blame them.

Because right now, I am unhappy. I walk around my apartment with swollen eyes, moping about how I'm just like everyone else, posting online about how I can't do this anymore, about how it happens every month, and every month like clockwork the darkness returns. But I know that soon the light will appear – so for today, I eat well, do yoga, meditate and run. I know it isn't a “cure,” but I know the more I take care of my body the more I'll see God through me. And maybe she can give me strength so I can see the light another day and remember what it's like to be happy – to smile ear to ear, thinking that maybe – hopefully, this time – I've escaped the darkness.

Declare Your Independence from PMDD - Nutrition Matters

Today we offer a two-for-one post, with a guest segment from Julie, a woman who, like me, has taken the responsibility for management of her PMDD symptoms into her own hands.  Read on to find out how and why. 

Let food be thy medicine and medicine be thy food. ~Hippocrates, founder of the Hippocratic School of Medicine

Julie starts:  Over a decade ago, I sat down with a doctor and burst into tears. Literally within moments, I had a prescription for an antidepressant.

I left feeling ashamed and deficient somehow. The drug didn't help at all and I was cycled through various others to see if one would finally work for me. When I decided to quit the search, I was tapered off of everything and felt like bolts of lightning were jolting through my body for weeks.

Nobody ever asked about my diet.

I've had three idiopathic blood clots. That means doctors can't identify what caused them. But now I take an anticoagulant for the rest of my life. For years, I've had to be careful about which foods I ate because certain foods could interfere with the medicine.

I even saw a gastroenterologist who wrote me a prescription for an anti-anxiety drug before printing me a list of foods that might be the culprit behind my constantly upset belly. There was no real plan, no follow-through. Just a drug to treat the symptoms.

I was told that my symptoms were all in my head and just manifesting themselves in my gut. I felt broken and shamed again.

Yoga was my first step in recovering from depression. I'm now a registered yoga teacher and practice almost daily. I meditate and take long walks to soothe my nervous anxiety. I have been gluten-free for years and until recently ate what I thought to be a fairly healthy diet. I don't drink or smoke or even drink caffeine. Most people who know me would probably consider me somewhat of a health nut.

One day it occurred to me that I would never just "open my medicine cabinet and start swallowing random handfuls of drugs." I don't even take Tylenol without checking to see if it's safe with anything else I have to take. But I do this with food. I open the refrigerator and...

I [finally realized that I] paid more attention to the appetizing picture on the package than to what was actually in the package. I finally understood that FOOD IS MEDICINE and that literally every single cell in my body was made of the food I chose to eat.

For the past several weeks, I've been eating nothing but clean food. I've removed all dairy, grains, legumes, soy, and sugar from my diet. I have piled my plate with veggies, fruit, and protein. Everything has been delicious and satisfying. I've definitely lost weight, and I've never felt deprived or gone to bed hungry.

But I've also gained strength and endurance. My sleep has improved. My skin is happy. And my resting heart rate has dropped steadily.

And this happened after only two weeks!

I'm much happier these days than I was a decade ago. I've fought for my own happiness. I now know who I am and what I need to feel like me. Antidepressants and anti-anxiety drugs are helpful to many and there's no shame in taking them—none—but they've become so stigmatized that we sometimes get defensive about them instead of fairly examining the whole picture.

None of the doctors I met ever asked me about my diet. I was told that my symptoms were all in my head. Who cares that my head happens to be connected to the rest of my body?

What we eat matters and affects our entire being, not just our physical body.

Did you know that body fat secretes hormones? It works like an organ. If any other organ were enlarged and throwing the rest of your system out of whack, you'd probably consider that a problem.

Food is comforting. These past weeks have been emotionally exhausting. I got a call from the vet who has been treating our beloved dog for his leukemia. When they diagnosed him, they said he had 7-60 days left. He fought for more than six months! Even so, the vet confirmed that we had to say goodbye. He suggested euthanasia was the most compassionate response. It was gut-wrenching. I was standing in Target sobbing and calling around looking for someone to come to the house that night to help my dog transition in peace.

During that situation and other, equally stressful situations, I found myself face to face with the reality that I use food to comfort myself. I longed for sugar, cream, grains... Cookies, basically. I stared at the brightly colored bags of treats and imagined what it would be like to eat them. To feel their crunch and sweetness and melting chocolate. I felt alarms going off in my head like an addict fighting to stay clean amid temptation. I pushed my cart through the store with eyes red from crying and left with my commitment to a clean diet intact.

Once at home, I made myself a bowl of chia seed pudding with coconut milk and cream, bananas, blueberries, and love. It satisfied and comforted me. It nourished me instead of making me feel sick and sad.

It's okay and good and right to feel comforted by your food. Food is medicine. Food is one of the truest joys in life. Learning to see food for what it really is has been an intense and eye-opening experience.

If you're looking to learn more about all of this, please go find a copy of the book, It Starts with Food. Written by a certified sports nutritionist, it's an absolutely fascinating and inspiring read.

Liana adds:  So make today the day you declare your independence from PMDD.  In addition to whatever treatment plan you are following, take a good, hard look at your food habits.  What you eat, when you eat, where you eat, and why you eat.  Read up on food and nutrition and how it all works to support and sustain your brain and body.  Do what you can to eat clean(er)—and feel the difference for yourself.  Become more body aware as you start to feel healthier. 

Make changes in small increments if that's the only way you can stick to a plan.  Baby steps. 

That's the way I did it, and, like Julie, my symptoms have eased to barely worth mentioning in the year and a half  I have been eating cleaner.  So much so that I haven't needed to take anything for anger, irritability, depression, mood swings or anxiety other than an extra 100mg of progesterone as needed.  (I wear an estrogen patch (.75.mg) and take 100 mg progesterone capsule at bedtime daily.  I take an added dose of progesterone (either via a second 100 mg capsule or a dime-size dollop of progesterone cream) on days when I feel symptomatic.)

Nutrition matters.  And you deserve to be nourished, not pacified.  So give cleaning up your diet a sincere effort, like Julie and I have.  There's nobody out there who can or even will do it for you.  It has to come from you.

Then, once you, too, feel stronger and have more stamina and energy—mentally, emotionally, and physically—you may be able, with the supervision of your medical practitioner, to be weaned from any substances (or situations) you have determined are making you feel worse...instead of better. 

And wouldn't that be something to celebrate?

Readers can find Julie on Instagram @hideadollar and can reach Liana either through posting a comment here or by emailing her at info (at) livingwithpmdd (dot) com.

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.  

Guest Post, Cat's Story: Living with PMDD

I have suffered with Premenstrual Dysphoric Disorder (PMDD) since I was 13, but I was only diagnosed at 27. For over 10 years I had been diagnosed as depressed and in and out of community mental health departments. After stopping the Pill and having a baby at age 21, my hormones went crazy and I suffered pre and post natal depression. In the years that followed I began noticing a pattern to my moods and depression. At times, I thought I really was severely mentally ill. I always had PMS, but I realised  my worst times happened when I was due on my period. My PMS was so severe  it had begun to take over my life, wreck relationships, ruin jobs, studying, and caused me so much emotional pain I often found myself considering suicide. I would become housebound, with no social life or friends and fearful of ever making an appointment because I could never guarantee how I would be feeling.

It was only my persistence and researching that made me realise I did in fact have a mood disorder and not straightforward depression. I Googled 'mood disorders' instead of depression and discovered PMDD – Premenstrual Dysphoric Disorder. I read the only book available at that time, and began to track my moods using a chart from the book. I found a GP willing to listen, took in printed information and my charts and got the correct diagnosis of Premenstrual Dysphoric Disorder. Coming to terms with what that meant took many years, and sometimes I still struggle.

PMS is one thing, many women suffer with moodiness, anger, irritability at pre-menstruation, but my PMDD threatened to destroy everything. As a mother, I felt I wasn't well enough to look after my children, I have been unable to work and feel really separated from the rest of the world. Only 3-8% of women suffer with PMDD, the rest get through each month without disaster. It is very difficult to find people to talk to who understand what I’m experiencing when PMDD is so rare, and when menstrual problems are often seen as something to joke about or ridicule. I have often dealt with comments like 'pull yourself together' and 'get a grip', and even people denying PMDD exists.

PMDD is distinguishable by the dysphoria that is experienced. Feelings of being completely overwhelmed, spiralling thoughts, outrage, anger, frustration, anxiety and suicidal ideation coupled with the physical symptoms, which can include, bloating, IBS, tender breasts, cramps, lower back pain, lethargy, and sleep and appetite changes. I am sensitive to the changes in hormones during my cycle, and I also experience a few days of unstable moods and physical symptoms during ovulation. My PMDD does not occur once a month but twice a month, leaving on average 10-14 days of feeling like me, and the rest being spent coping with symptoms. This will continue until menopause.

I am now 34 and have tried every medication offered to me. I have discovered I am very sensitive to any type of hormone and cannot tolerate the Pill or IUD. I spent a total of 5 years on anti-depressants, which never really worked for me. They took the edge off, but didn't stop the extreme lows and outbursts. I have seen psychiatrists and gynaecologists. At one point, I went through hormone treatment to stop all my hormones and put me into a chemical menopause. This is often a route that works for PMDD sufferers, and many go on to have hysterectomies. Unfortunately, this option did not work for me, and the treatment made me very ill.

I have found that counselling has helped, along with mind techniques such as CBT, NLP and meditation. Finding support is essential. Being able to talk through the irrational thoughts can usually avert disaster. Keeping busy is also a good way to keep the mind focused, so I draw, create, paint, write and bake lots!

I am now medication free for the first time in my life. I have had to learn my cycle and I now plan things around it. I avoid busy social situations when I know it will be too much for me. Eating healthily, regular exercise and avoiding stress has also helped improve my symptoms. Making sure I continue to communicate with loved ones and work through problems, finding strength to leave the house even when I don't want to and being open and outspoken about my disorder all contribute to life feeling easier and less stressful and traumatic. Fitting into society and getting a regular job is a whole other problem. After all, who would employ someone who can only function and deal with stressful situations for 10-14 days out of every month? I focus on my children and being the best mother I can be, my writing, art, and getting through each month without trauma. 

Living with PMDD is very challenging, but I am trying to make the best of my life, for me and my children. There is always hope, the negative feelings and dysphoria will always pass. Life is a rollercoaster but as someone once said to me – you're a long time dead. Women need to speak out and stop being ashamed of suffering from PMS/PMDD. Every voice helps change the way people think and I find talking and being honest is always the best option.

You can find out more by reading my PMDD blog and check out my artwork.

PMDD and Why Me?

Okay, we’ve heard enough stories for a while of what it’s like to have PMDD.We all know what it is by now.  And we know there is not much we can do about it once an episode hits.  The best we can hope for is to ride out the storm.  So a question I’m sure all of us have asked at one point or another is Why Me?

 Well, today I’m going to look into the possibilities I’ve uncovered so far.   First, however, a little background.  When does PMDD happen?  And How does PMDD progress? 

You don’t get it before your first period.  Girls, on average, in part due to the tremendous amount of environmental toxins being dumped into our lives, are now getting their first period at age 12.  Your probability of developing PMDD increases with each hormonal event in your life thereafter: pregnancy, miscarriage, abortion, or birth.  (You do not experience PMDD when you are pregnant, because you are not menstruating.) With each new pregnancy, your chances of developing PMDD increase.  And unless your PMDD is addressed, it will continue to worsen with each hormonal event, and as you age, becoming increasingly difficult through perimenopause, until it stops when you reach menopause.

But don’t start cheering yet…if your PMDD is not addressed before menopause, you run the serious risk of developing Major Depressive Disorder after menopause. 

The average age of menopause is 51. 

So, that means, on average, women have approximately 40 years during which we can develop PMDD.

What causes PMDD?

Nobody knows for sure just yet, but scientists do know it is a biological event that manifests as emotional symptoms.  What does that mean?  It means PMDD is caused by something that happens in your body and shows itself in your moods.  The closest science has come to defining what happens is that whatever happens, happens in concert with your menstrual cycle, and involves your hormones.  The hormones they are looking at the most these days are estrogen and progesterone.  It’s not that you have too much or too little, or maybe not even the balance between them, as this is still being studied, but that something goes awry in your brain when processing these hormonal fluctuations in your body.

That’s right.  Something goes wrong in your brain.  No news to us, right?  We’ve known all along something wasn’t right with our brains, with our thinking processes, during an episode of PMDD.  Why else would we say and do the things we say and do during an episode and not the rest of the month?

But I won’t go into all of that right now.  For now it’s good enough to know there is a biological “something” that happens where our brain does not properly process the fluctuating levels of our reproductive hormones during the second half of our menstrual cycle.  This leads to a disconnect in the brain, like when an extension cord comes apart from a plug, or when your cell phone coverage drops.  The result of this disconnect is a depletion of serotonin in the brain, the neurotransmitter that in part governs our moods, and our ability to be happy. 

This is why we crave carbs.  Carbs increase the level of serotonin in our bodies, and therefore improve our moods.  Problem is, most of us reach for the WRONG kind of carbs.  You know who you are and what you eat.  Not just any carbs will do.  But that’s the subject of another post. 

This is why doctors prescribe anti-depressants.  Certain antidepressants, called SSRI’s, help to increase the level of serotonin in our brains.  Problem is, we’re not low on serotonin all the time, and antidepressants come with a bunch of side effects that can make your symptoms worse.  Plus they don’t work at all for at least 40% of the women who take them.  (So if you’re one of the 40% or more, don’t blame yourself!)

This is why doctors prescribe birth control pills.  Birth control pills keep you from ovulating, which is the main cause of this shift in your hormones that your brain does not process correctly.  But again, this is treating only the symptoms and not the underlying cause, and birth control pills have their own array of side effects -- including death. 

Never mind that some women would rather be dead than suffer from another episode of PMDD.  I, for one, am not interested in taking something that could kill me when there are so many less drastic options to try.

Which brings me to the question of what contributes to PMDD?  Weight, lifestyle habits, including smoking, drinking, drug use, caffeine and sugar consumption, stress, trauma, abuse, and yes, genetics.  We’ll get more into genetics in another post.  For now it’s enough to know that in some cases, you really “can’t” help what happens to you when you’re experiencing an episode of PMDD.  It could be in your genes.

And if it’s in your genes, you’re not going to be able to cure it with a magic pill, be it synthetic or natural.  The best you can hope to do is manage the condition.

So what can you do about your PMDD?

You can address the things that apply to you. I’m not going to touch weight, because there are sooo many factors that go into a woman being overweight that it’s the most difficult of all for us to address.  (That’s a whole other blog post in itself as well, maybe even two or three.)  But yes, you can quit smoking, yes, you can cut down on your drinking, maybe even eliminate it altogether.  Same goes for caffeine -  you can cut out caffeine and not die – not like other options mentioned above.   You can cut back and even eliminate eating sugar.  And please do not make the mistake of thinking sugar substitutes are the answer to the situation.  If you’re determined to go that route, you’d be better off to keep eating sugar.  Raw sugar if you must, but no sugar is the best route of all.  Sugar feeds PMDD, and it also feeds cancer.  So think about it, and do what you can.

If you’re a sedentary soul, you can get more exercise.  Two to three half hour walks a week will do wonders for your PMDD.  45 minutes is even better.  Work your way up to whatever time you can spare.  Really, how can you not spare the time, when your life is at stake? 

Over-exercising is just as bad as not getting enough exercise.  More on why some other time.

Stress – starting to sound like a broken recording here, I know.  The stresses in our lives are as numerous and varied as our PMDD symptoms.  You know yours.  Get rid of them.   Don’t you deserve a better life? 

Rest – get as much as you can, especially during an episode.  Learn how to “Just Say No.”  Start small and work your way up.  And do it gently.  Don’t put it off until it becomes a snarl.

Nutrition – there’s a reason fresh, whole foods are good for you.  They’re packed with the nutrients your body, including your brain, needs to function properly.  You can’t get good nutrition from a box any more.  It just doesn’t happen.  And taking high quality, pharmaceutical grade vitamin supplements (not the cheap ones!) does help, but it doesn’t by a long shot make up for what you can do to make yourself feel better by simply eating foods as close to their natural state as possible.  Vitamins are meant to boost your nutritional balance, not replace what you lost from not eating right and depleting your body’s nutrients when you drink, smoke, and/or take drugs -- even common over the counter drugs. 

So there are a lot of things you can do to make your PMDD better.  Most, however, require time and effort.  It takes time to make good, healthy meals.  It takes time to listen to your body and become aware of what makes you feel better and what makes you feel worse.  It takes time to find the right treatment for your particular symptoms.  It takes time to make time for you, take time out for rest and relaxation, or deal with those messy stresses eating up your life.  It takes time to become comfortable with your emotions.  It takes time to work on your relationships.  It takes time to quit using the crutches you’ve been using to get through your however many years of PMDD.

But think of how many more years you have to go, and how it will only get worse if you don’t do something about it.  Do you want to spend your golden years depressed?

I know I don’t.  And I don’t want you to have to do it, either. 

You didn’t ask for the hand of cards you were dealt.  The best you can do is learn how to play them.  The information is out there. The willpower is inside you.  Are you going to sit around asking Why Me?

Or are you going to come to the table and say, Not Me. Not Today.

One day at a time.  That’s all you need to work with.  One hour at a time, if that’s all you have.  Pick one positive thing mentioned in this post, and do it for yourself, do it today.  Do the same thing tomorrow.  Keep doing it, one day at a time, until you have it down.  Then pick something else, and start the process all over again.  Baby steps are still steps in the right direction.

You can do it.  Because PMDD women are strong.  Super strong.  We have to be, with all that we have to deal with.

Liana is the author of PMDD and Relationships, a book written to help a woman with PMDD gain personal awareness, and insight into why she says and does the things she does.  PMDD: A Handbook for Partners, was written to help explain the unexplainable to partners of women with PMDD.  Either one of them can be used as a resource on tips for how to handle PMDD, or as a conversation starter for someone who wants to explain their PMDD to a loved one to someone they care about.  Both are available in ebook from Amazon and Smashwords (Kobo, ibooks, Nook, and Overdrive), and in print from Amazon, and the International Association for Premenstrual Disorders, or IAPMD.  For more information, please check out Liana's Facebook Page, Living with PMDD.