It started at the age of 12, when Jodie De Vere got her first period. Back then, it was mostly severe mood swings that lasted for a really long time, but symptoms worsened as she got older, she recalls.
“I was diagnosed as depressed, and bipolar [disorder] was mentioned a lot, but I know I wasn’t those things because it was a cycle linked to my period,” says the now 39 year-old Londoner. After almost 15 years and countless doctors’ appointments, she has finally been diagnosed with premenstrual dysphoric disorder (PMDD), a severe form of premenstrual syndrome (PMS) that is recognised by the NHS.
De Vere was looking up her symptoms online, when she came across NAPS, the National Association for Premenstrual Syndrome and the only advocacy group in the UK dedicated to PMS and PMDD sufferers. “There were people on there that were saying the same things that I felt. I made an appointment to go and see [the chairman, Dr. Nick Panay] and he literally saved my life,” she says. “Within an hour he just answered everything I said. He had a name for it, and that was the first time PMDD was mentioned.”
PMS is thought to affect between 5 and 10% of women to the extent that it prevents them getting on with their daily lives, according to the Royal College of Obstetricians and Gynaecologists (RCOG). However, it's thought that just a handful of these women experience PMDD.
While the precise causes of PMS – and PMDD – remain unknown, the impact these conditions can have on women’s lives is devastating, with repercussions on their careers, their everyday routine and the relationships with their family, friends and partners.
De Vere admits missing out on many professional opportunities because of her illness. “I’m self-employed on purpose, so that I can work around my PMDD. I kind of know my cycle now, and on my bad days I don’t plan to do anything, I don’t see anyone socially.”
Looking back, she realises that PMDD put a strain on all her relationships. It caused her to lose many friends, who would either blame her for being flaky and inconsistent, or put her under a lot of pressure. “The last thing you want is to feel guilty about feeling the way that you’re feeling,” she explains.
And her disorder almost put family bonds at risk, too. “My sister and I have fallen out for months on end, because she might have said something to me on a bad day, and I have just gone crazy at her because I couldn’t tell and I couldn’t control it,” she recalls. “It’s just something you can’t control; I’m not making any excuses, you just can’t. To me, it’s almost like an out-of-body experience.”
De Vere is now on a hormone treatment that induces a temporary "medical menopause" to manage her PMDD symptoms. One of her options is to get a hysterectomy and remove all or part of her womb, but she doesn’t want to rule out the idea of settling down with the right person and having biological children in the future.
For most PMDD patients, the biggest hurdle seems to be getting a correct diagnosis, as De Vere also points out: “There are women in the world who are being diagnosed with different mental illnesses and their doctors are not even considering it could be something to do with their cycle.”
We asked Dr. Panay, spokesperson for the RCOG and chair of NAPS, to explain some of the major symptoms of PMDD, and how it differs to PMS. Click through the slides to see what he said.
Depression and Mood Swings
“The symptoms of PMDD are similar to those of PMS, but are more exaggerated and often have more psychological symptoms than physical ones. These can include: feelings of hopelessness, persistent sadness or depression,” Dr. Panay explains.
Varying in type and degrees, PMS can cause a series of emotional issues that usually occur in the two weeks anticipating a woman’s period, and they often disappear by the end of it.
PMS symptoms already differ from regular physiological premenstrual symptoms because they interfere significantly with daily activities, but PMDD, the most intense form of PMS, can totally disrupt the lives of the women affected by it.
Depression is a common symptom of PMDD, and it can lead patients to experience suicidal thoughts. Women with PMDD may be referred by their GPs to a mental health specialist for further assessment and treatment.
Extreme Anger and Anxiety
In the past, Jodie De Vere had massive rows with her family, and she used to get labelled as aggressive, despite knowing, deep down, that her natural temperament was anything but that.
“I went through my 20s and probably my early 30s thinking: ‘God! You’re this really horrible person that wants to fight everyone!’ and I now know I’m not that kind of person and [it is] my illness [that] makes me that kind of person,” she says.
PMDD can often cause feelings of extreme anger and anxiety, as Dr. Panay explains, and it can have a very negative effect on a woman’s everyday life and relationships, preventing her from functioning at work, at home or in school.
“Diagnosis and management of PMDD and severe PMS can be difficult,” adds the doctor, suggesting the use of a diary or chart to record symptoms over at least two menstrual cycles, as recommended by the Royal College of Obstetricians and Gynaecologists (RCOG) and the National Association for Premenstrual Syndrome (NAPS) guidelines.
Decreased Interest in Usual Activities
A lack of interest in activities that were usually enjoyed, bouts of insomnia or sleeping much more than usual can also all be symptoms of PMDD, according to Dr. Panay.
De Vere says she can be forced to rest by physical pain and exhaustion, sometimes: “I get flu-like pain and I get so tired that I can’t get out of bed for a few days, at times.”
As Dr. Panay iterates: “It is normal for a woman to experience mild PMS symptoms in the two weeks before her period starts. However, if the symptoms are making everyday life difficult, she should initially see her GP and she may require a referral to a PMS specialist.”
Very Low Self-Esteem and Extreme Irritability
Women with PMDD may experience self-deprecating thoughts and feelings, when symptoms flare up. They may also feel particularly tense and irritable, encountering difficulties in many everyday social situations.
“PMDD and severe PMS can have a profoundly negative effect on a woman’s daily life,” says Dr. Panay. “[They are] diagnosed when mood symptoms seriously affect relationships and stop women from functioning properly in their daily lives.”
Unfortunately, very little is still currently known about these chronic conditions, and even Dr. Panay urges expansion of undergraduate and postgraduate training of healthcare professionals in helping patients to manage PMDD and severe PMS.
“The RCOG, in collaboration with NAPS, encourages expansion of PMDD and PMS education and ongoing research and continued development of effective and safe treatments,” he says.
If you're experiencing these symptoms in conjunction with your cycle, visit your GP, says Dr. Panay.
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