Pre-Menstrual Dysphoric Disorder is a debilitating condition that can make life very difficult for sufferers, but treatment and support is available
A couple of Sundays ago, I was lucky enough to be invited along to the live taping of RTÉ’s Dancing With The Stars.
A self-proclaimed reality TV nut, I was thrilled to peek behind the curtain and see the glitz and glamour up close. However, I’d forgotten to cross-reference the date before accepting the invitation. I didn’t realise that the show would coincide with the second day of my period when I said yes.
Flash forward to the night itself, and me, seated only inches from the dance floor and in full view of the cameras, praying fiercely that I’d make it through the three hours seated in studio.
Sweating, cramping, shaking and bleeding, I lasted without making a holy show of myself and with only one bathroom break (where I sat in the brace position, trying to stop the dizziness), thank God.
But that’s what it’s like for me for a few days every single month — or to be more accurate, every 25 days. Because I’m one of the 6pc of Irish women that lives with Pre-Menstrual Dysphoric Disorder, a severe and often debilitating form of PMS.
Periods are a part of all women’s lives, and for many, monthly pain, discomfort, bloating and mood swings are part and parcel of being alive.
Indeed, for people who menstruate, it’s just something that’s accepted and dealt with. But for those that suffer with PMDD, it’s more than just an irritant every month. I personally have to plan my entire life around my cycle, which is shortening as I get older.
At 37, I have no children, and for many years, I had a fairly normal period and the symptoms of PMS were at least partially eased by hormonal contraception in the form of the Pill and the coil, an intra-uterine device that secretes the sex hormone progesterone. But in my 30s, these methods of birth control started to disagree with me and I decided to go hormone-free. My everyday life improved, but I started noticing the specific days each month where I felt extremely unwell.
After keeping note, I saw they coincided with ovulation, and then the days leading up to my period. Four or five days out of every 25 are spent feeling like a stranger in my own skin.
I manage the symptoms because I have no other choice, and I do so very carefully. I don’t make plans around the days of the month when I know the pain will be unbearable, even with scheduled ibuprofen doses and hot water bottle compresses. I work from home when I know I will be bed-ridden with cramps, nausea, dizziness and extreme fatigue.
I have a special bra I wear when my breasts are too sore to touch, and clothes a size bigger to accommodate the swelling and water retention I develop. The crippling back pain, which often reduces me to tears and makes sleeping almost impossible is borne if not gracefully, then with grit.
Insomnia, digestive issues, hot flushes and more have been just part and parcel of this segment of my life every month for more than four years. But it’s the dysphoria that’s especially hard to describe and live with — a feeling that’s neither depression nor anxiety (though both can be present) but a disconnect from reality. It was this that I experienced on the dance floor that Sunday evening, a feeling of being not quite there, all the while in a lot of pain and discomfort.
And then, once my bleed is underway, I will snap back to normal. The morning after a particularly difficult night, I could wake up feeling like myself again, and continue to do so for almost three weeks. And then it all starts again.
PMDD is notoriously difficult to diagnose. My periods are not especially heavy, which rules out endometriosis. I don’t suffer from excessive hair growth or an irregular cycle, so it’s not polycystic ovaries. I’ve had internal and external ultrasounds that didn’t reveal and growths or fibroids. So with doctors flummoxed, PMDD is what’s left.
For the most part, I try not to let it affect my life. As a freelance writer and consultant, I’m spared the mortification of ringing in sick when things are really bad. I’m grateful when the worst symptoms fall on a weekend because I can take it easy. But I have gone to weddings, sat through awards ceremonies and sent magazines to press while enduring the worst symptoms, because what else can I do? Life doesn’t stop because I have my period.
Nicola McNally is 35 from Dublin. She says she’s always suffered from “really bad PMS” but was dismissed as being a moody teenager. “But as I grew up, the mood swings got even worse. I started to suffer from ovulation pain and noticed that five days before my period, my mood would decline sharply and my temper would get really short.
“I was diagnosed with endometriosis in the Coombe and then started to see Dr Sharon Moss in the Beacon Women’s Clinic. The main focus was treating my pain but my mood dips began to get even worse in my late 20s. I would be extremely paranoid, have sudden rage or slip into a deep depression over a matter of hours. Dr Moss diagnosed me with PMDD after seeing how badly the week before my period affected me.” Nicola’s moods are affected severely. “After ovulation, my mood will peak and slowly begin to decline until a couple of days before my period, when my emotions are totally out of control. It will vary from uncontrollable rage to thoughts of self-harm, paranoia and depression.”
She was put on sertraline, an SSRI anti-depressant (I take Lexapro myself) and also the progesterone-only pill to stop ovulation and the subsequent hormone crash. “One of the best treatments I have found is intense exercise in the first half of my cycle, especially in the days before my PMDD symptoms kick in. I’ve had acupuncture, tried different diets and given up alcohol.
“I also have therapy weekly and try to meditate daily. I want people to know that it’s terrifying to lose control of your emotions and be at the mercy of your hormones every month. The impact on relationships and work cannot be underestimated. I have essentially had to isolate myself when PMDD is at its worst, as I am scared of how I will react to other people.”
Shubhangi Karmakar is a junior doctor and public science communicator, and a trainee editor for the British Journal of Psychiatry. They have been living with PMDD since their late teens. They say that the fact they are a focused, happy and motivated person most of the time is what raised alarm bells.
“It was extremely difficult to bring the pattern of dysfunction to any doctor’s attention though, without it being misattributed or minimised. It wasn’t until I was actually studying PMDD medication trials as part of my Masters, that I ended up bringing the clinical criteria with me to my doctor, along with my own record of symptoms over time, and went through in detail what parts of it related specifically to me rather than a more general archetype.”
Dr Karamakar says that research shows PMDD isn’t necessarily to do with a hormonal imbalance, but more often diagnosed by actually listening to people’s symptoms as they experience them and looking for patterns.
“Symptoms for me feel like the bottom falls out of my world roughly the middle of every month, getting worse in the middle of my cycle, peaking for a couple of days between the 17-21 — when I wish the ground would swallow me up so I just wasn’t a burden to anyone anymore — and then all of this suddenly vanishing within 24 hours of my period starting.”
They note weight gain of up to 3.5kg over this time, and experience “viciously low mood”. Like Nicola, Dr Karamakar often feels isolated “because I lose my ability to have a ‘neutral’ day or interactions. I can end up sobbing for hours, waking up from hyper-vivid half-hour dreams that feel like they last a whole day with chest-crushing anxiety, or snapping if someone just looked at me in the wrong way — which is all just so unlike me the rest of the time.”
Dr Karamakar finds mefenamic acid, which is used to treat excessive menstrual bleeding and pain, quite useful, but it’s formal psychotherapy that has helped them the most. “It helps me normalise my experiences in a confidential space and provides me with meaningful supports to help my interpersonal interactions during PMDD, so I don’t always feel like I’m walking the sharp edge of a blade if I need people to give me a bit of grace, or seek a little help during a particularly hard time.”
Speaking to Nicola and Shubhangi, I realise that I am in fact lucky in many ways. While I certainly feel anti-social and hyper irritable just before my period, I am to some degree able to grit my teeth and cope to a point. Their experience tells me that mine could be even worse. All three of us are keen to raise awareness and let people know that you can be a successful, professional person with a sunny disposition most of the time, yet fall victim to the symptoms.
“Before I knew of PMDD, I always called it ‘feeling like Dr Jekyll and Mr Hyde’,” explains Dr Karamakar. “It definitely feels like that stark and injurious of a personality change at times — but underneath it all, somewhere in there, I am still just me.”
⬤ What is it?
Pre-Menstrual Dysphoric Disorder is a pattern of mood symptoms, somatic symptoms and/or cognitive symptoms that begin several days before the onset of menstruation
⬤ Whom does it affect?
In Ireland, 6pc of women are said to live with PMDD; in the United States, it’s one in 10
⬤ What can be done?
Psychotherapy, hormonal contraception and non-steroidal anti-inflammatories like mefenamic acid can all help, but it’s a condition often misdiagnosed and treatment varies from patient to patient.
⬤ I think I may have PMDD
Visit your doctor or gynaecologist to rule out other women’s health issues like endometriosis, polycystic ovarian syndrome or fibroids. A health professional can offer diagnostic support and advice.
For more on PMDD, please see wellwomancentre.ie