PMDD is the potentially debilitating form of PMS. Yet most women do not know what it is, let alone whether they have it. Deirdre Reynolds reports.
BESET by that familiar sense of foreboding each month, most women reach for the hot water bottle and chocolate in a bid to “Outsmart Mother Nature”, as Tampax once put it.
For Catherine Stocker, the year-round battle with PMS is so extreme that the mum of two has had to quit her job and is even considering a hysterectomy in a bid to get her life back.
Around 85% of women of childbearing age suffer from at least one symptom of premenstrual syndrome such as anxiety, fatigue, breast tenderness, and bloating each month, according to the American College of Obstetricians and Gynecologists.
For up to 8%, however, the bad mood synonymous with PMS is so intense, it’s putting their career, relationships, and sometimes even their lives at risk.
Originally from Cavan, Catherine is just one of the Irish women living with premenstrual dysphoric disorder, the name given to the potentially debilitating form of PMS. Yet up until two years ago, like many of the doctors she sought help from over the years, she had never even heard of PMDD.
“It would have started when I was about 16,” the 35-year-old tells Feelgood from her home in Dublin. “I would get very, very depressed, and have irritable moods and sometimes quite hyper moods.
“By the time I’d turned 17 it had gotten quite bad, and I was experiencing panic and anxiety, and I was acting out a lot as well because I just didn’t know how to cope with what was happening me.
“I was in the absolute throes of despair for a few weeks and then it would lift and I’d be completely fine again.”
Although Catherine is in the minority, her backstory certainly isn’t new to Dr Shirley McQuade, medical director of the Dublin Well Woman Centre. “Someone with PMDD will come in to me and say, ‘This is what I did last week... I picked a fight with somebody when it was completely irrational’,” she says.
“PMDD can have the physical aspect as well, but it’s the emotional bit where [it] is really PMDD — these women can go from being completely irrational and feeling really, really low and depressed to being completely normal two days later, and it’s always at a particular time of the cycle any time after ovulation.
“Once ovulation has happened, the second half of the cycle is called the luteal phase and the second half of the cycle is where this problem happens,” she explains.
“So you get someone who’s completely normal for at least half the month, and then suddenly they have this brain episode [where] they know they’re being irrational, they pick fights with their partner, the partner can give them a wide berth for that particular time of the cycle because they know that’s when the rows are going to be, and all the rest of it.
“It’s a sensitivity to the altered hormones that happen to everybody, so there’s no blood test that we can do. For example, the woman with PMDD, her hormone profile will look exactly the same as a woman who doesn’t have any PMS whatsoever.
“It’s really a conversation with the patient about the cyclical nature of the symptoms.”
It was in the vacuum of such discourse that Catherine revealed she was first misdiagnosed with depression in her teens and, later, in her 20s, bipolar disorder before finally joining the dots herself when she became pregnant with her first child in 2014.
“When you think PMS, you think maybe a few days before your period,” she says. “You don’t think something that’s happening a full two weeks before you’re due on could be connected.
“PMDD goes into remission when you’re pregnant because you’re not ovulating. I would, honest to God, say that the nine months of that pregnancy was the first time I had properly felt like myself since I was 16.
“For the first time in my entire adult life, I had a full year in which I was OK, and it was revelatory.
“On April 27, 2015, which was about four months after my little girl was born, I crashed again,” she continues, “and I could recognise it so clearly as the doom that comes for me.
“Bang on two weeks after that, my first period kicked in. That was my lightbulb moment: ‘This is what is causing this’.”
Three decades after setting up the Women’s Nutritional Advisory Service to help British women survive PMS, Maryon Stewart says she read a controversial extract from Frank Bures’ 2016 book, The Geography of Madness, claiming the syndrome is “a figment of our menstruation-fearing culture”, and thought to herself, ‘here we go again’.
Speaking to Feelgood, the author of No More PMS, among dozens of other books on women’s health, fears many girls are still buying into the myth that the headaches and mood swings are “all part of being a woman”.
“No one’s taught anything,” argues Stewart, who says she can help women suffering from regular PMS to become symptom-free without medication in four to six months. “I still have amazing stories every week from women with hormone problems who have just given up hope because they’re not taught even now [about PMS].
“They literally describe themselves [as] Jekyll and Hyde — they’re just unable to control themselves. Relationships break down.”
Stewart and her team carried out five separate studies of 1,000 women. They found that between 50% and 80% had low magnesium stores, and other nutrients like iron, zinc, essential fatty acids, B vitamins, calcium, vitamin D were often in short supply.
“We then came to understand that when we were helping women to put back into their body what time and nature had taken out in terms of nutrients, it was having a normalising effect on their brain chemistry and their hormone function,” she says.
“It isn’t rocket science. There’s just very little education for doctors and practice nurses, and women are very much left to fend for themselves, which is just awful.
“The biggest complaint I get on my programme to this day is that people don’t know their period’s arriving because it catches them unaware.”
While most of her clients’ PMS symptoms can be eased by gentle exercise, magnesium supplements, or cutting down on coffee, for those living with PMDD, beating the “monthly curse” is more complicated, according to Dr Shirley McQuade, and typically requires prescribing an antidepressant such as Prozac.
“PMDD is a dysphoria,” she says, “because it’s the emotional aspect of things, it’s not the physical, it’s more difficult. The key thing is that their sensitivity to the change in hormones is only improved by increasing their serotonin levels, and so that’s where the medication comes in.
“If a patient has PMDD, and it’s extreme, I would try and persuade them to go on an SSRI [selective serotonin reuptake inhibitor], but a lot of women are reluctant [because] they see those as being antidepressant medication, and they see them as potentially being addictive.
“With PMDD, it isn’t true depression that they’re experiencing, so in fact, they can have medication for two weeks out of four, or even one week out of four; it’s not like regular depression where you’ve got to take medication all the time.”
One study published in the Journal of Molecular Psychiatry this year floated the idea of using gene therapy to tackle PMDD after the National Institutes of Health in the US found genetic evidence of the disorder.
Dr Peter Schmidt, of the behavioural endocrinology section of the National Institute of Mental Health, explained: “We found dysregulated expression in a suspect gene complex which adds to evidence that PMDD is a disorder of cellular response to oestrogen and progesterone.
“Learning more about the role of this gene complex holds hope for improved treatment of such prevalent reproductive endocrine-related mood disorders.”
Taking the Pill also helped a little in the past for Catherine, who is now considering more drastic alternatives, including injections to shut down her ovaries and a full hysterectomy, as she prepares for her symptoms to return any day now, four months after the birth of her son, Theo.
“This is not, for me at least, a disorder that is manageable and liveable with,” says Catherine, who also has a two-and-a-half year-old daughter, Martha. “Certainly I would be strongly considering going down the surgical route just because living with it is a nightmare.
“I’ve spent months of my life in hospital. I’ve had intense suicidal ideation. I’ve had to leave jobs I loved because of it.
“My partner is amazing, but it affects your relationships. You just lose faith in yourself completely and have to withdraw from various aspects of your life because of it.
“It has stolen half my life from me, as far as I’m concerned.”
In an era where PMS is still deemed by some as a figment of women’s imaginations, speaking out isn’t easy, admits Catherine, who was diagnosed by a PMDD specialist at the Female Hormone Clinic at London’s Maudsley Hospital.
If it helps just one Irish woman who’s suffering in silence, however, it’s worth it, she says: “PMDD is absolutely not talked about. I find that when I’m talking to healthcare professionals that I’m almost apologetic about it — I’m starting on the back foot of trying to convince them that I haven’t invented this disorder.
“I do think it’s something that should be covered in school and another thing that would need to happen here is education for GPs.”
In the meantime, the student outreach officer, who left her job at Trinity College because of her symptoms, urged women and girls here to use a period tracker app to get to grips with their cycle.
“Understanding it is so important,” says Catherine, who’s a member of the PMDD Awareness Ireland Facebook support group. “Although the diagnosis hasn’t meant it has gone away, I just it changed my life knowing what this is. Now I’m hoping not to have to go down the surgical route.”
How to beat the monthly blues
© Irish Examiner Ltd. All rights reserved