Imagine Having To Choose Between Your Mental Health And Your Fertility

PMDD affects an estimated 2-5 percent of women. Symptoms can include acute depression and anxiety, and even suicidal thoughts, and the only sure-fire cure for some women? A hysterectomy.


by Sarah Graham |
Updated on

Naomi* was just 14 when, in the fortnight before each period, she started seeing and hearing disturbing images and voices. 'I thought there were sexual images everywhere – like I'd be watching TV and see sex toys and stuff, or I'd be looking at books and they appeared to have changed, or I thought they were talking to me in some way,' she says. 'It was really frightening. Then, when I had my period, the symptoms would stop and go away.'

Now 23, Naomi has been diagnosed with conditions known as pre-menstrual dysphoric disorder (PMDD) and pre-menstrual psychosis (PMP) – and is facing a stark, life-changing choice between her sanity and her fertility.

A severe form of PMS, PMDD is thought to affect an estimated 2-5 percent of women which equates to around a million women in the UK alone and, at its most extreme, symptoms can include acute depression and anxiety, and even suicidal thoughts.

Vicky Pattison, who was diagnosed with PMDD earlier this year, recently revealed that she was left feeling 'stupid and ashamed' after her symptoms were brushed off as milder pre-menstrual syndrome (PMS) by medics. She suffered from 'crippling anxiety', insomnia and fatigue throughout her late 20s, and the disorder would leave her sofa-bound for up to 10 days at a time.

Appearing before the Women and Equalities Committee as part of its inquiry into women's reproductive health, Pattison also revealed she ended up paying for private healthcare after failing to get the care she needed on the NHS. 'I can't tell you how many times I got told, "They'll [her symptoms] get worse as you get older, this is just natural," she said. 'And you believe it. You absolutely believe it and you believe that you're weak, that you can't cope with what every other woman is coping with.'

While PMDD can be managed with hormonal treatments, currently the only sure-fire way of putting an end to the condition is with a hysterectomy, bringing on an early menopause and leaving you infertile.

'We first talked about me having a hysterectomy last summer, when I was really ill,' Naomi explains. 'It was like 'oh shit, Naomi's got ill again, what's the last alternative?' I was adamant back then that I didn't want it – because I wanted to be able to have children one day.'

A year on, she adds, 'it's really interesting how I've changed and become more accustomed to it.' Naomi met with her gynaecologist just last month, and is now hoping a hysterectomy is on the not-too-distant horizon. 'My friend had a hysterectomy at 23 and has done really well out of it – she's got her life back – so she's been really useful to talk to,' Naomi says.

'When I got ill recently, I'd only feel slightly better when I talked about the hysterectomy – it's like it's given me a light at the end of the tunnel. I'm all set now, I'm one step closer to having the operation,' she adds.

And, while the impact on her fertility has weighed heavily, Naomi now feels her mental health is too important to put at risk. 'I don't really want to have kids now anyway, because I want my life back. I want stability in my own life. I don't want to bring children into this world and then have post-natal psychosis, post-natal depression,' she says.

'I'd have to come off all my treatment to get pregnant in the first place. I could potentially have the children taken away from me, or I could end up killing myself. It would be really risky.'

At her worst, Naomi says, she's been hospitalised, sectioned under the Mental Health Act, and even gone missing for days at a time while suffering from psychotic mania. 'It's like sleep walking into a car crash. In between times, I'm really, really well. I can do anything I want to – hold down a job, socialise normally, get on with my life and make the most of it – but I know at the back of my mind there's something looming; that I'll probably be ill again in the near future,' she explains. 'I've found myself in some really horrible, scary, serious situations.'

Despite this relentless cycle, Naomi has been forced to battle her psychiatrist on the issue of her hysterectomy. 'He wrote a letter to my surgeon saying, 'I don't think she should have it' – without consulting me or letting me know,' she says. 'We've had to formally dismiss him, because it's my body at the end of the day.'

Like many women with PMDD, Naomi was originally misdiagnosed as having bipolar, despite a gynaecologist pointing out early on the possible hormonal link. 'My psychiatrist wanted me to go on lithium [typically used to treat the manic episodes of bipolar], but lithium doesn't get to the root cause of the problem. I'd still get ill, and have awful side effects,' she explains.

'It's been such a battle over the years, I've had to keep fighting, picking myself up. I've had nearly 40 episodes in nine years, and every time I saw the psychiatrist they'd say 'maybe you need to go up a dose, or change this, change that.' I literally don't have time with my condition. I could die – it's that serious,' Naomi adds.

'It was a gynaecologist who first convinced my psychiatrist to try me on the pill, and I got well for a few months, but then it wore off,' she says. 'I've tried various other hormonal treatments until where I am now – induced menopause injections, hormone patches and implants, hormone replacement therapy (HRT). They're not perfect though, and never well be. Hormone treatments can't suppress my cycle completely.'

For her, the prospect of having a hysterectomy would mean finally reclaiming the life that's been disrupted since she was a teenager. 'I missed out on such key parts of my social development, because I was in and out of an adolescent mental health unit and missed a lot of school,' she says. 'It's been such a big part of my life for so long, I think it will be a bit of a shock, adapting to my life without it.'

However, Naomi adds, both she and her family are looking forward to the new independence it will give her. 'My parents will probably fly away somewhere and be happy as clams, because they've had to look after me every time, intensely,' she says.

'My mum's been so supportive – she had to leave her job to look after me, and she's done so much awareness raising. [After the hysterectomy], I can have my life and she can have hers, and be able to do what she wants again. If I'm able to finish my degree, maybe do a masters, get on with going travelling, that will be great. It feels like I'm finally being granted all my wishes.'

*Names have been changed.

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