The Daily Mail 11 June 2013
- Symptoms include irrational fear of death and extreme self-loathing
- Some suggest it is a hormonal disorder rather than a psychiatric one
- Treatments include increasing female hormone levels or a hysterectomy
The joy of new motherhood turned to terror when four days after giving birth, Sarah Hall became convinced she was being stalked by a killer.
She began to pace the house at night, believing she was at risk of a fatal attack if she slept.
‘If I ever allowed myself to drift off, I would jerk awake, full of adrenaline,’ she says. ‘I could never relax, it was the feeling you might have if you were cornered by a lion, but I had it the whole time.’
Despite being head of modern languages at a secondary school, and enjoying a comfortable home with her partner of 15 years, Sarah’s life had for some time been dogged by regular monthly attacks of ‘madness’.
But these became intolerable after the birth of her daughter, Francesca, now four.
Sarah, then 41 from Caversham, Berkshire, says she wanted to die. ‘I couldn’t cope with life, let alone looking after a baby. I felt there was no point in going on.’
In a nine-year struggle to conceive she suffered an ectopic pregnancy (where the foetus implants outside the womb), then had surgery for fibroids, followed by a miscarriage and three failed IVF attempts.
Francesca, who was conceived naturally when Sarah was 40, was a joyful miracle she never thought would happen. But sadly, the worsening of the monthly madness meant trying for another baby was out of the question.
Despite the fact Sarah and her partner are still together, she says what happened has damaged their relationship. ‘He is hurt and completely traumatised by the emotional turmoil I put him through,’ she says.
‘We love each other but I can’t say the relationship is 100 per cent on track even now I’m so much better.’
Sarah suffered from a controversial condition known as ‘menstrual psychosis’. Her symptoms were relatively mild, and although she had to take time off work intermittently, she was able to continue with her job.
She was also prescribed a variety of anti-depressants and sleeping tablets, which she thinks were ‘sometimes effective’.
However, for some other women, it is a different story.
A similar monthly mental collapse for Uma Shah, 31, from Welling, Kent, left her trembling uncontrollably on the floor in a foetal position.
Her life was dominated by all-day sobbing attacks, which got worse, despite she says, a happy marriage and a stimulating job in publishing.
‘I would often walk down the street with tears running down my face,’ she says. ‘I couldn’t sleep, I had terrible panic and anxiety attacks, and both my husband and I noticed that it was linked to where I was in my monthly cycle.’
She was prescribed a range of anti-depressants, tranquilisers and sleeping tablets, with little or no effect, and eventually had to give up the job she loved.
For Carol Green, now 69, from Steyning, West Sussex, much of the trauma associated with the onset of her madness has been wiped from her memory.
That’s because as well as the decades when half of each month was lost because she was unable to function normally, her memory has been damaged by electric shock treatment after her psychosis became so serious that she was admitted to a psychiatric hospital following a suicide attempt.
‘I have met other women with this condition, and there is no question it destroys lives,’ says Carol who has two sons, aged 26 and 29, from her first marriage. ‘There just aren’t enough doctors interested in it.’
Irrational fear of death, or a desire to die coupled with extreme self-loathing, are common symptoms.
Women may also experience phantom stalkers, phantom heart attacks (where they suffer extreme chest pain), or debilitating day-long sobbing attacks, triggered by extreme despair not linked to an identifiable cause.
What these women have in common is that they found standard anti-depressants had little or no effect on their mental state.
For them, a descent into psychosis – extreme delusional mental illness – seems linked to their psychological reaction to fluctuating monthly levels of female hormones.
The very existence of the condition is controversial, with the notion of ‘hysteria’ – literally madness associated with the womb – considered Victorian and outmoded by most modern doctors.
John Studd, a former professor of obstetrics and gynaecology at Imperial College, London, is one of only a handful of doctors with an interest in the condition. He says premenstrual psychotic illness is regularly misdiagnosed as manic depression.
‘It is not a psychiatric disorder, it is a hormonal disorder and can be treated by hormones, but it can’t be diagnosed by measuring hormone levels,’ he says.
‘You have to diagnose it from the fact that an affected woman has runs of good days and bad days in every month. They often feel well during pregnancy – better than normal, but then suffer postnatal depression.
‘Women are being misdiagnosed and subjected to years of psychiatric treatment which is just not helping them.’
Once diagnosed, treatments include gels and patches which release booster doses of the female hormone oestrogen through the skin, and tablets of progestogen, a synthetic version of another key female hormone, progesterone.
The patches or gels are meant to even out fluctuations in natural hormone levels, while progestogen is needed to trigger a period and prevent the uncontrolled build-up of womb lining (which can increase the risk of cancer).
After women affected have finished having children, a more permanent, though drastic, option is to remove the womb and ovaries.
Sarah Hall, who was treated by Sovra Whitcroft, a specialist gynaecologist in Guildford, Surrey, as well as Mr Studd, is convinced the hysterectomy she had last December has solved her problems.
Sarah, now 45, also has implants under her skin for a controlled, slow-release dose of oestrogen, as well as testosterone to boost her energy and libido. ‘I thought I would never feel normal again but I am so much better, I can’t believe it,’ she says.
‘This is a terrible condition, but it can be treated by hysterectomy,’ says Carol Green, who has also had the radical surgery.
Carol began receiving hormone implants in 1998 thanks to the determination of her husband to find a cure for her severe, cyclical mental illness.
She had a hysterectomy two years ago. ‘Sadly the idea of taking women’s wombs out for mental illness just isn’t talked about,’ she says. ‘They would rather lock you up in a psychiatric ward and blast electric shocks through you.’
Uma Shah is now receiving progestogen tablets and oestrogen boosters in the form of a simple gel which she rubs on her arm daily. She says the treatment transformed her, and her loyal husband of seven years, Manish, 34, a digital security expert, is delighted by the change.
Uma’s first baby was born last month. ‘I am aware I may get post-natal depression, because of this problem I have, but at least I will be prepared for it, and I will know what treatment to look for,’ she says.
Ian Brockington, former professor of psychiatry at Birmingham University, has been studying menstrual psychosis since the Seventies, and is a pioneer of hormone treatment.
He says symptoms in susceptible girls and women can begin even before the onset of periods, and continue, as in Carol Green’s case, after the menopause.
He is devoting his retirement to setting up an international group called Action on Menstrual Psychosis, to try to raise awareness.
‘”Most psychiatrists don’t know about this and there are hundreds of severely affected women who never receive the help they need,’ he says.”‘
The ways that female hormones affect the brains of some women but not others, are not understood, but there is little doubt they can trigger or relieve mental illness.
In a recent U.S. study, doctors reported that boosting oestrogen can even reduce symptoms in women with schizophrenia.
But although guidelines from the Royal College of Obstetricians and Gynaecologists suggest the use of oestrogen patches to treat ‘pre-menstrual syndrome’ – an umbrella term to cover everything from mild depression to psychosis – there is disagreement about whether they work.
‘There is no good evidence for the existence of menstrual psychosis,’ says Professor Kathryn Abel, director of the Centre for Women’s Mental Health at Manchester University.
‘I think these women have rapid cycling manic depression. You might give them hormones, but you still need anti-depressants as well.’
A spokesman for the Royal College of Psychiatrists said there are no guidelines on the use of hormones to treat mental illness, but rejected the suggestion that psychiatrists are resistant to the idea of prescribing them.