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Woman in painiStock

You think your PMS is bad? Try living with PMDD

An image of Lucinda Everett for BBC 5 Live
Lucinda Everett for BBC 5 Live

For most women, PMS is an unpleasant but manageable part of their period. But for 5-8% of women (around 80,000 in the UK), their symptoms are so severe they can be fatal.

Laura, 38, first noticed something was wrong at 17.

“One day, I literally hit the floor,” she says. “I was hyperventilating, my mum was calling doctors to try and sedate me.”

Laura experienced anxiety and panic attacks into her twenties, and was forced to temp because she couldn’t hold down a job. “Every month I’d get so tired I’d have to sleep 18 hours a day for three days. I started getting suicidal thoughts.”

She was suffering from Severe PMS or, as it is sometimes referred to in the UK, Premenstrual Dysphoric Disorder. The condition is recognised by the NHS.

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“PMDD is actually the American Psychiatric Association’s definition of one type of Severe PMS,” says consultant gynaecologist Dr Nick Panay. The UK’s definition is slightly different. “‘Severe’ symptoms interfere with someone’s ability to function normally.”

For some sufferers, symptoms can last for three weeks each month.

Sarah, 23, developed PMDD at 14. “I got anxious and depressed and then I got psychosis – seeing and hearing things – and I was sometimes manic.” She was hospitalised, diagnosed with Bipolar disorder and spent the next year in and out of the hospital's adolescent psychiatric unit.

“Severe PMS is often misdiagnosed,” says Professor John Studd, a consultant gynaecologist. “And because the symptoms are cyclical, psychiatrists sometimes say it’s Bipolar disorder and then patients have therapy for years with anti-psychotics like lithium.”

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I’d get up in the night feeling furious for no reason and start smashing plates.

Rachael

Rachael, 35, has had symptoms since she was 14, and has experienced “could-have-killed-somebody rages".

"I’d get up in the night feeling furious for no reason and start smashing plates.”

But it was her former partner who first diagnosed her correctly, over 10 years later.

“I read the information and it was like ‘Oh my god, that’s me’. I kept mentioning it to doctors but they kept giving me antidepressants and anti-anxiety medication.”

Eventually, her life imploded. She quit her job in the police and left her children with her mother for six weeks.

“I’d got to a stage where I was going to have myself sectioned. I’d be driving down the road and suddenly want to put my car in front of a truck.”

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What often really strikes me when I see a woman with this condition is how long it’s taken for them to be taken seriously.

Dr Panay, Chairman of the National Association for Premenstrual Syndrome

Sarah has had similar problems getting medical professionals to recognise her condition. “I now have a gynaecologist who’s convinced it’s PMDD, but my psychiatrist, who I’m actually not working with anymore, still says I have Bipolar with a hormonal element.”

One doctor told Laura to count herself lucky she wasn’t living in the Middle Ages, as she’d have been burned as a witch.

“What often really strikes me when I see a woman with this condition,” says Dr Panay, who is also Chairman of the National Association for Premenstrual Syndrome (NAPS), “is how long it’s taken for them to be taken seriously, and how relieved they are when somebody finally offers them evidence-based treatments.”

“It’s nearly always treatable,” says Professor Studd, who usually recommends oestrogen in a skin gel or patches. “It’s a safe way to suppress the cycle and cyclical symptoms.”

Hormone gelsiStock

Hormone gels worked for Rachael. “I’ve had no thoughts of suicide. Me and my partner barely argue. It’s a 95% improvement.”

Sarah relies on a combination of four treatments to suppress her cycle. But this only works for six months before she becomes unwell again.

She is considering having both a hysterectomy and her ovaries removed, but isn't certain about the decision yet.

“Last summer, I was sectioned twice and started thinking, ‘This can’t go on.’ People have tried to tell me I’ll regret it but I don’t want to bring someone into this world then have them get hurt or have something happen to me. Recently, during a really bad episode, I nearly tried to kill myself. I sometimes think I’d rather have the operation than go through that again.”

In the meantime, she is focused on completing her degree. She’s looking forward to a future in which she can “travel, plan things in advance, and hold something down for a year or longer. I’m determined. I’m doing well.”

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Rachael is also resolute. She’s starting college and hopes to eventually do a psychology degree. “I loved the police and was on one of the top pay scales. Then all this happened and I felt I’d never be a valued member of society again. Now I’m thinking maybe I’m destined to help other women.”

Laura, similarly, says that, “2017 is the year this all gets sorted.” She hopes to have a hysterectomy approved soon.

“I’m grateful for what I have – a great partner who has a lovely little girl, our lovely home and cats – but I’ve got no savings or career. There are things I’d like to achieve that I know I’m capable of. Imagine what I could do with four weeks a month!”

Laura heads the Vicious Cycle project, which produces awareness campaigns, works with NAPS to push for doctors to be better-educated in the condition, and runs a flourishing Facebook support group, which all three women credit as a great help.

Earlier this year, a study found that PMDD is caused by a genetic vulnerability. “That’s exciting,” says Dr Panay. “Once you’ve found a causative genetic factor, you’ve got the possibility of developing a diagnostic test and targeted gene therapies. They’re in very early development so there’s no immediate prospect of those options happening in the next few years. But progress is definitely being made.”

You can learn more about Rachael's story on the 5 live Facebook page.

You can find support and information on mental health on the BBC Action Line pages.