PMDD Symptom Play by Play Number 1

The following 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.

Talking and writing openly about Premenstrual Dysphoric Disorder is something I'm compelled to do, both for myself, other women, and the people who love us. I'm trying to understand myself and this very complicated phenomenon that seems to slip and shift into unrecognizable forms within a recognizable framework every month. Since learning about PMDD, I am now free to witness the cyclical changes taking place in my body and mind with some objectivity. As my body becomes more and more sensitive to the hormones surging through it, I'm less fearful about why I'm suddenly losing control, wondering how much worse it will get. It's easier to pay attention to the process, fascinated and taking notes.

Truly, as hard as it is to understand, things can be very different month to month. What I've done here is journal some of my symptoms in the days leading up to one period a few months ago. Were I to do this monthly, no doubt the expression of symptoms could be different each time. Typically, women begin to experience symptoms 14 to 11 days out from menstruation. The actual period tends to bring relief either instantly or within a couple of days. But again, this is only generally speaking. What I have garnered on the forums and from my own experience is there are exceptions to this rule, and a woman should not rule out PMDD just because she doesn't fit some erroneous profile that was originally established on a very small base of women. And if, like me, your hormones are in flux anyway due to perimenopause, you might indeed be a bit all over the symptom map!

With 11 days to go...The first thing I notice is an almost instant loss of my sense of humor. It was there one second, gone the next. My husband noticed it since we had been laughing for days prior. It isn't that things have ceased being humorous so much as that I have stopped being able to find humor in them. Even my face feels like it has forgotten how to move upward into a smile. The next thing I finally notice is growing fatigue. In fact, I'd slept 12 hours for two nights in three days. This is an absurdly long amount for me to sleep. I didn't even wake to relieve my bladder which is a common occurrence during a night of much less sleep. I gave into this need for sleep instead of fighting it off, and I think it did me a world of good. I also notice my body feeling colder. I wear a sweater and my hands ache with cold even though the temperature isn't that different from weeks prior. Then there's the hunger. I'd probably be eating all day long if I could. The menu? Salty chips, roasted nuts, dark chocolate, and butter on all manner of cakey-bready things. Unfortunately, the baker where we used to get our organic sourdough stopped taking orders, so I'm left with unfulfilled pangs and cravings for hot buttered toast or French toast. When it comes to food, I know I can't give into every craving anyway. I'd be the size of a buffalo. So, I balance things as best I can eating oat crackers and high-quality chocolate along with the grapefruit and parsley juice and salad and fruit. For the weeks leading up to this time, I was making banana shakes using almond milk, including the spices turmeric, cardamom, and cinnamon...each known to alleviate various PMDD symptoms like depression. I've also started taking magnesium which is supposed to help with symptoms. We'll see if I notice anything.

With 6 or 7 days to go...I felt like I was doing better this time around contrasted with last month. Is it the spices? The magnesium? Luck? I've noticed that, generally, I have good months and bad months. This makes the whole concept of PMDD even harder to understand and, for some, to believe. And yet, other women express the same experience. Some say every third period is the worst. I seem to have three on, three off...way off. Will this be a good month? Weepiness has set in and my legs are starting to feel like two leaden logs, so maybe it is too soon to tell. (Note from Liana: this good month/bad month pattern has been explained by whether or not the woman is ovulating.  If  you ovulate, you will experience PMDD symptoms.  As we enter perimenopause, we have fewer and fewer ovulations.  No ovulation = no symptoms.)

5 days and my mind is off and racing. I can't stop over-analyzing, over-thinking, and over-compensating. Some who know me might say I'm always like that. Okay, so, imagine that ramped up by 10. I've become afraid of the world, and what were merely challenges have become insurmountable obstacles. My husband is doing his best to distract me and also to listen to me without himself becoming depressed and defeated. Somehow, I've managed to regain my sense of humor, and this is really saving the day. Squirrel! 

4-2 days: Could I actually get through this month without losing it completely? I've had three social obligations in the last three days, and though as an introvert I'm feeling the drain, it isn't debilitating. The fact that I could even be social just a few days before my period is somewhat of a miracle.

1 day to go and everything I thought I'd managed to escape this cycle has come down full-force. The internal pressure I feel...how to describe it...has increased dramatically, making me very antsy...agitated. I feel like a combustible material. Pour the wrong remark over me and I will blow up.

So what happened next? I was attempting to control an out-of-hand ant problem (yes, ironic...me being antsy and all). My husband was pressuring me to leave for grocery shopping because the stores would close soon. He wasn't helping or taking part in what I saw as a near-disaster. Yes, I realize ants are not a near-disaster, but PMDD magnifies everything by about 1000. Couldn't he see what I was dealing with? I became furious.

So my husband asks, "Why are you acting like an asshole?"

Wrong move. That was it. The end of marital bliss. I may well have been an asshole, but I didn't need anyone pointing it out to me, thank you very much. I tore the shopping list in two, gave him his half and wished him luck. Despite wanting to call a truce in the market, I couldn't bring myself to do it because of the way he was now behaving...like an asshole.

The thing is, if I act like a big-enough asshole, then eventually, so does my husband. And then, we're lost. We're lost for an hour, a day, a week...hard to tell. But I know I can't engage with him AT ALL if he's also going to be a two-year old. And then I hate him because he doesn't have a "hormotional" excuse and could be making all this so much easier for us both.  (emphasis added)

Why couldn't he just have grabbed me, hugged me, and told me the ants were a little problem and that if I could just walk away I would feel better? Herein lies the greatest PMDD difficulty for me and countless others. Our behavior becomes exceedingly difficult if not impossible to control. (Liana adds: and once we have reached that tipping point, we are literally unable to go back, to retreat, to regain control.  All our efforts to soften our PMDD symptoms (meditation, herbs, vitamins, exercise, rest, nutrition, mantras, art or music therapy) are done in an effort to not reach that tipping point.  Because once we have, all is lost for that day or that PMDD episode. This is what most people do not understand.  We can't stop, once the emotional cascade begins.)

We're not doing it to be difficult. We're not doing it because we like throwing tantrums. We don't even get any pleasure out of it. Well, maybe some do. I don't. Mostly, I see a madwoman taking over my body and wonder how on earth to reach her, calm her, and love her. It is no easier for our significant others who try desperately to understand us as we're suddenly shooting daggers at them when five minutes ago they could do no wrong.

My husband and I talk about this stuff when we can. When I'm back to my old self again and after he's recovered, we talk about this funny thing called PMDD. We strategize and decide we can handle it. We make-up and go about our lives...laughing, loving, sometimes bugging each other, but getting over it. But then, when it rolls around again, it seems neither one of us remembers what to do. It's a common amnesia.

When I can, I will do another symptom play by play post. In the meantime, have you noticed similar symptoms in your own or a loved one's life?

PMDD Quote of the Week

Getting out of PMDD is as if someone who is strangling you around your neck, suddenly decides to let you live.  Slowly releases their hands and you feel the air kicking into your lungs, and you immediately start appreciating your life, your talents, and your inspiration for life.  And you feel accomplished for making it one more time... Congratulations, strong ladies!  ~Miroslava Byrns

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Liana's PMDD Website Finally Launched!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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