Donna was told she was stressed and the ‘cure’ was more sex. In factshe had a crippling new form of PMS
By at www.dailymail.co.uk
Last updated at 12:19 PM on 06th October 2009
Consider this: there’s a condition which has a seriously disruptive effect on women’s livesleading to severe depression and wreaking havoc on their work and relationships. Yet many GPs aren’t aware it exists.
Meanwhileeven the specialists who do acknowledge it can’t agree on what it should be called.
This confusion has devastating consequenceswith many sufferers being misdiagnosed with manic depression (bipolar disorder) and treated with antidepressants or antipsychoticsorat the other extremetold simply to pull themselves together.
Long battle: PMDD sufferer Donna Barrowman with her son Jamie
Yetwith proper hormonal treatmentthey could soon be leading normalhealthy lives.
The condition is premenstrual dysphoric disorder (PMDD). An estimated 800,000 women in Britain suffer from itwith symptoms including severe depressionloss of energyanxietyirritability and feelings of hopelessness for up to two weeks before menstruation.
American psychiatrists invented the label to distinguish it from the far milder and more common premenstrual syndrome (PMS).
The problemsay expertsis that GPs tend to assume any problem linked to the menstrual cycle is this mild form – for which they normally recommend lifestyle changes such as regular exercise and cutting back on sugar.
Later this month the National Association for Premenstrual Syndrome will be sending all GPs the first guidelines distinguishing between PMDD and PMS and their treatments.
But as hormonal expert Nick Panay explainswhatever the more serious condition is calleddoctors and gynaecologists need to recognise that it must not be mistaken for PMSand that women with these more severe symptoms need treatment with hormones.
‘It’s still too common for doctors to assume that women with PMDD are making a fuss about relatively minor symptoms – and even to accuse them of being acopic [unable to cope] or lacking moral fibre,’ says Mr Panaya gynaecologist at Queen Charlotte’s Hospital in London.
Like the milder formPMDD occurs in women who are sensitive to the fluctuating levels of hormones during the menstrual cycle. In the two weeks after ovulationprogesterone increases dramatically – it’s this hormone that is responsible for premenstrual mood swings.
Premenstrual tension causes headaches – and abdominal aches – for many women
Donna Barrowman was a brightconfident 22-year-oldengaged to the man of her dreams and with a job she loved. Life was rosy – except for the monthly occasions-when her energy and self-belief plummeted so low she could barely get through the day.
‘From seeing myself as a strong person who coped well and enjoyed life to the fullin the ten days or so before my periodI’d turn into someone who was constantly tired and who obsessed about a friend’s trivial remark or an incident at work that I’d normally brush off without a second thought,’ explains Donna.
A support worker for adults with mental health problemsshe quickly recognised the symptoms were linked to her menstrual cycle. Yet her GP told her repeatedly that she’d just have to put up with themand even the specialists made light of it.
‘After being referred to a gynaecologistI told him how I was finding everyday life increasingly impossible and it seemed to come and go on a cyclical basis,’ says Donna. ‘I asked him if there might be a connection with my periods. He told me that was nonsensethat I was obviously stressed and should have more sex. I can laugh nowbut at the time it was desperately hurtful – one more person telling me it was my fault I was feeling so bad.’
In June 2003Donna was put on Depo Proveraa monthly contraception injection her GP assured her would regularise her periods.
But what is a useful therapy for healthy women causes havoc in those with PMDD as it gives them more progesterone.
Donna’s monthly low mood turned into full-blown depression and her periods became so heavy that ordinary life became impossible. ‘I could barely get out of bed,’ she recalls.
The contraceptive was stopped after three months. Her wedding to Alana marketing and sales managerwent ahead that yearbut he had to get used to her Jekyll and Hyde personality. ‘He was never sure which woman he’d come home to: my normalbubbly self or someone who was withdrawnsnappy and tired.’
When she became pregnant with Jamienow threelife suddenly took an upturn. ‘I didn’t feel out of sorts once when I was pregnant,’ says Donna. ‘I thought I’d found the answer and that motherhood would make me healthy and happy again.’
In factDonna’s disruptive hormonal swings had disappeared because she was no longer menstruating – a classic sign of PMDD. Immediately after Jamie’s birthalong with her periodsher symptoms returned with a vengeance.
But instead of recognising this patterndoctors diagnosed her with postnatal depression and prescribed antidepressantswhich made no difference. Exactly the same pattern followed when she became pregnant with Blair two years later: the same diagnosisthe same antidepressants.
This timeDonna had had enough. Through the internet she discovered the National Association for Premenstrual Syndrome (NAPS) and was referred to Dr Heather Curriea gynaecologist and expert in hormonal problems at Dumfries and Galloway Royal Infirmary.
An estimated 800,000 women in the UK suffer from premenstrual dysphoric disorder
‘She told me that my medical history couldn’t have been clearer – the way that I’d reacted so badly to the progesterone injectionfor instanceand the fact the symptoms disappeared when I was pregnant were obvious signs that my problems were hormonal,’ says Donna.
‘She told me it wasn’t my fault and I didn’t have to put up it. ‘It was such a relief to hear that. Yet I was angrytoo. I shouldn’t have had to suffer just because of other people’s ignorance.’
Once correctly diagnosedPMDD is relatively straightforward to treat. Most women can be helped with oestrogen patchespills or creams or with a monthly injection that shuts down the menstrual cycletemporarily mimicking the menopause. For those who have completed their familiesa hysterectomy is another option.
In March this year Donna was given the injectionand within a month her symptoms had gone. The transformation was so great that in Augustjust a few weeks before her 30th birthdayshe had a hysterectomy to make the benefits permanent.
With the disorder recognised by doctors for 45 yearswhy did Donna suffer such a delay in getting help?
Part of the problemsays Mr Panayis that international research to improve diagnosis and treatment has been held up because doctors can’t agree on the best name for it.
The word ‘dysphoria’he sayssimply means having a mood disorder. But because some gynaecologists think this gives PMDD a psychiatric labelthey are reluctant to use it. ‘The result is that women are still being seen by doctors who are failing to distinguish between PMS and the more serious disorder,’ he adds.
Professor John Studda gynaecologist who runs the London PMS & Menopause Clinic in Wimpole StreetCentral Londonis adamant that the name PMDD suggests it’s a psychiatric problem and thus gives the misleading impression antidepressants such as Prozac will help.
‘What matters is that doctors realise it’s entirely caused by abnormal sensitivity to hormones and that women stop suffering when their ovaries stop working: i.e. when they become pregnantmenopausal or have a hysterectomy with their ovaries removed,’ he says.
‘Otherwisein all but the most severe casesthey can be helped with oestrogen patches or creams to bypass the hormonal damage.’
As for GPsthey often feel that the hormonal link is over-stated.
‘PMSwhether mild or severeundoubtedly has a hormonal basis,’ says Dr Steve Fieldchair of council at the Royal College of General Practitioners. ‘But depression can be a factor in severe cases and GPs will want to treat this symptom as part of their holistic care of patients.’
Early next yeara group of international experts will finally decide what to call this debilitating condition.
MeanwhileDonna’s advice for sufferers is to forget about the name and complete the online diary provided by NAPS (www.pms.org.uk). This is the key to diagnosis because it proves the problem is cyclical and demonstrates its severity.
As Donna explains: ‘It gives you the confidence to go to your doctor and make sure you get the help you needshowing that your hormones are not an excuse for bad behaviour but the cause of the problem.’