'It's like living a half life'

Imagine you spent the last fortnight fighting for your life. You were drowned, deserted at sea or found clinging to the edge of a cliff. But you don’t have a single scar or broken bone to show for it. And, this happens every month. 

It sounds like the stuff of nightmares. But these three scenarios were all used describe a condition you’ve almost certainly not heard of: Premenstrual Dysphoric Disorder (PMDD).  

For roughly two weeks of each month:

You aren’t alone if you haven’t heard of this condition. But it's also jaw-droppingly common. One in every 20 menstruating people are estimated to have PMDD. In the UK, that’s almost the entire population of Leeds. In London, that’s almost certainly hundreds of thousands of people. 

According to official data, only 10% of medical professionals feel comfortable diagnosing PMDD. But the life-threatening comparisons above are no joke.

Approximately half of people with PMDD cut, hit, or burn themselves as a coping mechanism.

Up to 72% of people with PMDD have suicidal ideation and more than one third attempt suicide. You are seven times more likely to attempt suicide if you have this condition.

Perhaps the most painful is that Bel described how comparatively lucky she feels.

“People with chronic fatigue or bipolar cannot plan their life around this. I can, for two weeks of my life, I have to stay indoors. If I’ve done too much, I start to vomit. That’s how I know I’ve overdone it.”

Bel added: “No matter how clean I eat, or how hard I train, it still comes back. It’s relentless. I’m also on some really aggressive treatments that seem never ending".

What is Eleanor's view of the NHS's treatment of PMDD? “There is so much time wasted. There are so many misdiagnoses. I had actually been medicated for the wrong thing since I was 13".

The mother of one says she was simply given the pill and told that will fix the problem. "There needs to be a better path for girls and women. The medical misogyny has been rife. It’s high time that changed”.

The notion of medical misogyny is now so widely acknowledged in the UK that former Health Secretary Wes Streeting has said: “There is absolutely no question that the NHS has a problem with basic everyday sexism and an appalling culture of medical misogyny".

In response, an NHS England spokesperson said: "Too often in the NHS we hear of women whose health concerns have been dismissed, and we are actively addressing this through education, training and improving services – including establishing hubs with specific services for women in local communities.

"This will give thousands more women access to specialist support closer to their homes and will be expanded further by the roll-out of wider neighbourhood health services across the country as part of our 10 Year Health Plan. We are also working closely with the Government on implementing the renewed Women's Health Strategy".

Eleanor kindly submitted the drawing and poem you see on the right. Art is one of the things Eleanor uses to process what it’s like to live with this condition.

Phoebe Williams is founder and CEO of The PMDD Project - an organisation raising awareness, providing supporting and funding research into PMDD. 

Williams said: “At every stage of the PMDD journey people are being let down. Right now, we’re facing a significant crisis in awareness and care, and the reality is that we are still a long way behind where we need to be".

The charity founder noted that there is hope on the horizon for people with PMDD - in the form of research. But she said: "But research alone isn’t enough! We need PMDD to be recognised and treated as the serious medical condition it is". She acknowledged the UK Government's Women's Health Strategy, but said momentum and investments must continue.

"Now is the time to ensure meaningful action follows these promises and that future generations don’t have to fight as hard to be heard". The Department of Health and Social Care were also approached for comment.

Dr Nicky Wilson, a Women’s Health GP who specialises in the condition, highlighted the challenge to diagnose the condition.

She said: “There is no blood test for PMDD, which potentially makes it easier to miss. Clinicians and patients often need more time than ten minutes together (more than the average for an NHS GP) to understand what is happening".

For anyone concerned they might have the condition, Wilson recommended booking a double GP appointment where possible. Many also recommend tracking your physical and emotional symptoms on each day of your menstrual cycle to understand if there is a pattern. Wilson also pointed to resources on IAPMD’s website and that of the The National Association of Premenstrual Disorders.

The image painted in this article can seem bleak. But the thing so many of these interviewees reminded me of was; how happy they were to have moments of joy. Many talked of the indescribable feeling when the cloud of their luteal phase shifted - bringing with it at least a week or more of almost symptom-free time. 

One of the most striking things about the interviewees I’ve spoken to is their ability to build community. This comes in the form of hundreds of WhatsApp groups, online support groups, video calls, text chains, Reddit threads, in-person support groups, peer-support workers and more.

In the perceived absence of dedicated medical support, a village of community has been built by so many - not just in London and the UK, but beyond.