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‘We cannot afford, financially or emotionally, to fight to be heard’

Stephanie Cullen has fought PMDD, a severe mental health disorder, ever since she began to menstruate. She’s calling for a healthcare system that recognises women’s health conditions.

Voices

As I leave the gynaecologist’s office, 20 years after my symptoms began, I feel seen for the first time. 

I’m 34 and I’ve been living with Premenstrual Dysphoric Disorder (PMDD) since my first period. My body has felt like a testing ground for contraception, while my brain has been abhorrently tortured by this awful condition. I’ve often felt as though I’m drowning. My happiness buried by an avalanche of anxiety, intrusive and suicidal thoughts that occur every fortnight and last until my period arrives. 

Premenstrual Dysphoric Disorder is a severe negative reaction in the brain to the normal hormone fluctuations of the menstrual cycle. It affects 1 in 20 women and AFAB individuals. A recent global study showed 34% of these will attempt suicide. 

The first time I attempted suicide I was just 13 years old. 

This became a pattern that repeated itself when I’d feel again, as if I’d completed the course of every available treatment – yet to find one which worked and didn’t make me wish I was dead for two weeks of every month. 

PMDD can last the duration of the luteal phase of someone’s menstrual cycle. It is an abnormal reaction to the rise and fall of oestrogen and progesterone occurring after ovulation, and subsiding when a new menstrual cycle begins.

It is not a hormone imbalance, and while many healthcare providers still refer to it as PMS, anyone with PMDD will know, it is so much more than that. Symptoms can include depression, anxiety, panic attacks, suicidal ideation, self-harm, changes in appetite, profound fatigue along with joint pain, and more. I also have migraine attacks, painful periods and allergies, before my period arrives. 

When I first heard about the (now launched) Women’s Health Strategy For England back in 2020 I was full of hope. Finally the government is going to start looking after those of us who, for too long, have been let down by GPs when reporting reproductive health issues. My hope was short-lived when I heard MP Nadine Dorries on BBC Woman’s Hour expressing her belief that women “must stand up to their doctors”.

From that I can only assume she is fortunate enough to see doctors who don’t take 12 years to diagnose PMDD – which is, on average, how long it takes the rest of us to get an accurate diagnosis. 

Lack of education in the healthcare system leaves us at a disadvantage. We are tired of having to stand up to our doctors.

Hence why the strategy must be about more than the not-so-simple act of ‘standing up to doctors’ but instead designed to ensure we don’t need to. By delivering on its promise of better education for healthcare providers, understanding women’s health across the spectrum, along with education in schools, the system can work to prevent negative health outcomes for women and girls. In order to reduce suicidality in women with PMDD, we need funding for individualised treatment plans with departments such as psychiatry and gynaecology collaborating when providing reproductive healthcare.

‘When we get it right for women, everyone in our society benefits’

In the call for evidence prior to the strategy launch, 84% of women felt as though they had not been listened to by their healthcare provider. A further 47% said their menstrual health symptoms were fobbed off as normal by GPs.

With many of us still feeling shame when openly discussing menstruation, the idea of standing up to a healthcare provider is a nonstarter. Aged 20, after having visited my GP for the best part of a decade with suicidal ideation and reoccurring panic attacks – which I could correlate directly with my menstrual cycle – they still told me that “all women suffer a little PMS”.

If healthcare providers were better educated in women’s health, they could assist us in making the connection between our hormones and our mental health. HRT shortages and extraordinarily lengthy wait times for specialist referral are leaving many of us in a mental health crisis, with diagnoses of PMDD still lagging painfully behind as a core women’s health issue. 

In the spring of this year, almost a year after my second child was born, my PMDD symptoms had returned with a vengeance and I was feeling desperate. My return to work was pending and I didn’t know how I’d cope with a job, two children and a cyclical disorder that rendered me suicidal and often bed-bound for one to two weeks every month.

I know awareness is vital, so I used Instagram to take part in Premenstrual Disorder Awareness Month. The month, facilitated by IAPMD (The International Association for Premenstrual Disorders), runs throughout April each year to raise awareness of premenstrual disorders and fundraise to continue the fight for better standards of care and further research. I’ve since become a permanent volunteer for the charity in a bid to continue raising vital awareness and I work tirelessly to reach out to those who are suffering and signpost them to help.

IAPMD is a font of premenstrual disorder knowledge. Their website includes essential tools for speaking to your healthcare provider, and a provider directory whereby patients can add the details of PMD informed providers worldwide. 

I hope this new strategy for women’s health starts making strides soon, because we cannot afford financially or emotionally to fight tooth and nail to be heard. As Women’s Health Ambassador Dame Lesley Regan says: “When we get it right for women, everyone in our society benefits.”

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