PMDD

Painful Misery Demon Disorder

Disclaimer: I’m not a doctor, an expert or any kind of medical professional. This is about my own experience of PMDD and what I’ve been told by several GPs and specialists over a ten year period.

Every month I mark my calendar with single black dots on the days when my PMDD is at its absolute worst. On a good month I might mark only three or four days. On a bad month it can be half the days or more given over to that rock-bottom feeling, that dread, that exhaustion, that anxiety. I can usually track its arrival- knowing that it’s on the way soon even if I can’t pinpoint exactly the morning when I’ll wake up and find myself totally unable to get out of bed. I’ve had PMDD for about as long as I’ve had a period and was diagnosed years ago, but still- somehow- it always feels like the first time, and the worst time.

The basics

Here are the phases of the menstrual cycle just so we’re all on the same page before we get into the thick of PMDD. Usually lasting between 21 and 35 days, a menstrual cycle begins with the menstrual phase (the bleeding bit. 3-7 days usually). This is followed by the follicular phase (starts on the first day of your period and lasts for about 14 days as your uterine lining thickens and follicles grow on the surface of your ovaries). Then comes ovulation (the release of a mature egg that hopes to be fertilised- this is when people trying for un bebe will have most chance of conceiving one). Finally, the luteal phase (that mature egg travelling down your fallopian tubes into the uterus, which has continued to thicken in preparation for a potential un bebe. Anyone who doesn’t fall pregnant at this point will now have a period and the cycle will begin again.)

What is PMDD, then?

PMDD = Premenstrual Dysphoric Disorder and is, in essence, a very severe form of PMS. I wish I could give you so much more- but wider understanding and research still feels scant, despite the huge numbers of us going through this. When describing it I say: I have a cyclical mood disorder that affects me differently during the phases of my cycle. Some doctors will refer to it the same or call it an endocrine disorder (e.g. relating to hormones and hormone secreting glands). You’ll likely know (or come to know) yourself what feels right and most accurately describes what you’re going through. I sometimes think of it as being allergic to parts my own menstrual cycle. It begins and my brain goes HEY???? OW?? NO?? Again, not biologically sound but feels pretty bang on.

Symptoms of PMDD usually peak during the luteal phase (e.g. egg whiffing down into the uterus prior to your period). I learned recently that PMDD was once referred to as LLDD- e.g. late luteal dysphoric disorder, so there you go. Symptoms can include severe anxiety, irritability, deep depression, suicidal ideation, anger, disorientation, confusion, dissatisfaction in your relationship or your life, tearfulness, paranoia, fatigue, dizziness, changes in sleep pattern and sex drive, sensitivity to rejection, difficulty concentrating, bloating, weight changes, digestive issues, swelling, headaches, physical pains and more.

My experience with PMDD

Not to brag, but I experience most of these symptoms to some degree each month during my luteal phase. The physical symptoms come first- my energy takes a massive hit, my appetite careens up and down hour to hour and my joints start to burn like I’ve run a marathon without any training. Currently I’m poised around here- unable to pull myself easily out of sleep in the morning, head beginning to fill with fog, aches building from discomfort to real pain. My mood is dipping, too, and I write this now knowing that by close of day today or tomorrow morning I likely won’t be able to write at all. I’ll spend most of the day in bed, getting up only to use the bathroom or get a drink of water. Work will be done horizontally if there’s no option to postpone it.

PMDD has ruled and shaped so much of my life for more than a decade. It has curtailed my ambitions, harmed my relationships, hurt my prospects and time and again undermined the trust and love I so want to be able to feel for myself. I don’t write that for sympathy- I write it simply because it’s true. The more I seek answers and understanding and ways I could better cope, the deeper my understanding goes of just how much damage has been done.

Diagnosis

Getting a diagnosis of PMDD requires patience, persistence and careful tracking of your symptoms alongside your cycle. I won’t sugarcoat it- it’s very hard work. My advice for someone pursuing a diagnosis is to start your records now, backdate them as necessary, and then take hard copies into your GP (or present them over the phone if you- like myself and most people I know- haven’t had an in person appointment in years). Let them know what you’re coming in to talk about, insist upon being heard out and if you don’t feel listened to or taken seriously, make another appointment with another GP the moment your first appointment ends. There’s no single definitive test they can run, so the criteria for diagnosis usually involves tracking your mood and physical symptoms alongside your cycle. You may be given an exam or go through some tests (usually to rule out other possible conditions), but in my experience it usually comes down to the severity of your symptoms and how those symptoms align with your menstrual cycle.

Treatment

The advice I’ve heard again and again to ease my PMDD symptoms is to build good eating and exercise habits into my routine. Having done this I can say- sure, helpful. But considering the depth of my depression and despair during the very bad days, tracking my protein intake and getting a jog or even a short walk in becomes virtually impossible.

Personally, I’ve found antidepressants to be very helpful when managing my own symptoms, though this isn’t always the case and requires careful thought and proper discussion with a helpful and trusted GP. My approach is less standard and involves taking a very low dose of an SSRI (a type of antidepressant which usually has fewer side-effects and is usually the first to be offered for depression) in the few days preceding ovulation and throughout my luteal phase until I begin to feel better, when I will then taper off for that month. Full disclosure: I’ve only ever come across a few other sufferers doing this. I started doing it at the advice of a GP, though some psychiatrists I’ve spoken to since have cautioned me that it is quite unorthodox and they’d be reticent to recommend it. In other words, this is not something I’m encouraging anyone to try, but for transparencies sake this has helped me somewhat in my battle against the lowest of low moments. A good vitamin regime is something I’ve also built into my routine and it hasn’t done me any harm- again, do ask your doctor which they’d advise and what to expect.

I also arrange as much of my life around my bad days as possible. I’m self-employed (largely because I live with this mood-disorder and have other not so groovy things going on with my brain) and so I’m broadly able to schedule important meetings and deadlines for times when I’m not passed out, sobbing under a pillow or lying catatonic on the sofa. I work weekends and evenings instead and have had to be very open with editors, clients and my gorgeous podcast co-hosts about what I usually am and am not able to do during the black-dot days. It’s not always possible, though, and when I do have to perform on bad days I make sure to give myself as much rest and recovery time afterwards.

I’ve talked to dozens and dozens and dozens of other sufferers by now and there are many other remedies at play. Magnesium, microdosing, marathon running, multivitamins, contraceptive pills, acupuncture, veganism, anti-histamines, total diet overhauls- none I am advising you to try, all I am simply passing along as heard from others. We’re all basically all in Hell together, trying this and that and hoping to feel better. That’s PMDD care, baby!

All of that to say…

…PMDD is a bastard of a thing and every person I’ve ever met who suffers with it has to perform their own set of superhuman feats every month just to live. As my own mood spirals downwards yet again I’m doing my best to keep that in mind and resist the impulse to turn on myself. For a handful of days I will rock and cry and rail against the world and doubt every decision I’ve ever made. It will be very hard. But then it will be slightly less hard, and then even less hard than that, and then I will be up above the surface of things, breathing the air and feeling okay, then alright, then good, then happy. This is not enough, not really, not for a whole life, but for now I hold onto it with all I have.

Image used:

Terrible fate of a young woman who after a calumny was snatched by the devil and dragged to hell / José Guadalupe Posada