PMDD: Extreme PMS
By Sian Thatcher
The therapist shook her head. "I have no idea what's wrong with you," she says. For Elizabeth Freundel, these words came as no surprise. During the past six years, she had seen seven psychiatrists - each one conjuring up wildly different diagnoses. According to one she was bipolar, while another said she was epileptic. She had taken a full spectrum of psychiatric drugs - three years on lithium, one year on Seroxat, mixed in with a potent cocktail of anticonvulsants, Valium and more. She was having around five panic attacks a day and was severely depressed - and no one had any idea what was wrong with her. She had endured this for almost 15 years and hope of finding a solution was beginning to fade.
Elizabeth's problems started aged 12. She morphed from an adventurous and friendly child into a surly, withdrawn teenager. She would oscillate from feeling depressed and anxious to being herself again every month, but she suffered mostly in silence, assuming that this was the norm. "I felt exhausted and confused from this rollercoaster of emotions," she says. "I tried to keep it all inside, just raging internally instead.
"When I was 18, I started getting deeply depressed on a cyclical basis and also had an upset stomach, bad period pains and felt exceptionally lethargic. I felt like I had some sort of muscle-wasting disease. My weight went down to just under eight stone and I'm five foot nine, so I was quite skinny." She went to the doctor about her period pain and was given painkillers, but she never thought her problems could be related.
By the time she went to Cambridge University, her condition became unmanageable and she started to "go a wee bit nuts". She was fine for two weeks a month, but the rest of the time suffered panic attacks and was unable to work. "When I was low, I would spend 16 hours a day hiding under duvets sobbing to myself," she says. "But as soon as my period started, I was like, 'let's go partying' - it was that delineated." Her work was suffering, so she started to see a psychiatrist in her second year and was diagnosed with bipolar disorder and put on a course of lithium, which had no effect.
After university, she went to work for an auction house. She enjoyed her job and was ambitious, but by the time she left, she suffered even more frequent panic attacks, bouts of irritable bowel syndrome and menstruated all the time.
It was at this stage that her latest psychiatrist told her there was nothing they could do. Elizabeth, then 27, felt she was just a "non-functioning human being". To try to solve her menstrual problems at least, she Googled "Harley Street" and "gynaecologist" and came across Professor John Studd. "I made an appointment and after I mentioned a few symptoms, he stopped me and said, 'I know exactly what's wrong with you, and it's PMS [premenstrual syndrome]'. I just thought, 'You're the maddest man in Maddsville'."
He prescribed injections that shut down her ovaries, so she has no hormonal cycle. She has oestrogen and testosterone implants in her abdomen and has to have bone density scans every year to make sure she isn't developing osteoporosis, but says she feels good. "The treatment worked pretty much immediately. I'm so grateful to Dr Studd," says Elizabeth, now 30. "I'm a completely different person. I went from being a weepy, crazy, needy individual to being absolutely fine. I'm angry because I've wasted so much time being sick and if I'd know this so many years ago, I could have fixed it."
While Elizabeth's story is extreme, this severe form of PMS is very prevalent. Nicholas Panay, the chairman of the National Association for Premenstrual Syndrome (Naps) and consultant gynaecologist, suggests that up to 10 per cent of women in this country suffer from this illness, but that few people realise it exists. "It's a serious condition," he says. "The difficulty is that PMS symptoms are common. A lot of people have mild PMS, but there is a group who have severe symptoms that can make lives a misery." Indeed, what these women are dealing with is not PMS but Premenstrual Dysphoric Disorder (PMDD).
No one knows exactly what causes PMDD, but it seems to be linked to ovarian activity. "We know that it's a cyclical phenomenon, probably caused by fluctuations in hormone levels, which have a reciprocal effect on the chemical messengers in the brain," says Dr Panay.
Women who are more sensitive to their changing hormone levels may experience symptoms such as depression, mood swings, uncontrollable rage, inability to cope and anxiety attacks. Fluid retention, breast tenderness, bloating and migraines are also common. Taken to its extreme, there have been recorded cases of suicide and one woman was acquitted of murder on the grounds of "temporary insanity from suppression of the menses". "I've been involved with cases of children being taken away from mothers because of PMDD," says Dr Panay. "And then after appropriate treatment, the children have been returned, as she's no longer a danger."
While it can affect women in their teens and twenties, symptoms tend to be milder and it's not usually until their early thirties or after the birth of a first or second child that they seek help for it. And because symptoms vary, it is often misdiagnosed. Dr Panay estimates that between 25 and 50 per cent of the women he sees in his specialist PMDD clinic have been misdiagnosed with mental disorders, ranging from bipolar and depression to anxiety problems. Indeed, he says, GPs have not been trained to deal with this condition.
Thousands of women are told there is no treatment for this, when there are many ways to make symptoms bearable. "The first course of action is to minimise stress in your life, make sure you've got an optimal diet and exercise regularly," says Dr Panay. "Cutting out or reducing alcohol, caffeine and chocolate is important, as these exacerbate symptoms. Evening primrose is effective, but only to combat breast tenderness and fluid retention. Vitamin B6, calcium, vitamin D and Agnus Castus have been shown to be of benefit in easing mild to moderate PMS."
For women with PMDD, further intervention is needed in the shape of hormone therapy or antidepressants. "Cipramil (Celexa) and Cipralex (Lexapro) are the best antidepressants for this," says Dr Panay. Other women prefer to go down the hormone-therapy route and the simplest treatment is the Pill, which provides a constant hormonal environment, but it must be used without a seven-day break. If the Pill doesn't work, then the next step is oestrogen patches, which are 70 to 80 per cent effective. A more successful treatment, again, is the one Elizabeth uses - a monthly injection that suppresses the cycle, mimicking the menopause.
"The only complete cure is either the menopause or the removal of the ovaries," says Dr Panay. "Obviously, that's not feasible in the majority of women and we don't advocate that as a first line, but there are one or two women a year who will resort to hysterectomy."
Naps is campaigning for better awareness of this condition. Its website (www.pms.org.uk) attracts thousands of people, and the forums and helpline are a particular source of comfort. For many women, just finding that they're not alone is a relief. But Naps only has under one year left before it runs out of funds, and it islooking for sponsors to keep the society running.
"PMDD may not kill you," says Dr Panay. "But longevity means nothing without quality of life."
PMDD: the symptoms
The physical symptoms are the same for PMS and PMDD, and while the emotional symptoms are similar, they are much more severe for PMDD. For example, mild depression is not uncommon with PMS, but with PMDD, women may experience significant depression to the point of contemplating suicide.
If you have severe panic attacks, bouts of anger, irritability or depression before your period that affect your relationships at home and in work, you may have PMDD.
The best way to confirm this is to keep a symptom diary, and record the severity and timing of symptoms. If the symptoms occur throughout the cycle, it's unlikely to be PMDD.