Yahoo Lifestyle Inside the PMDD network where women are taking control of their health
“You shouldn’t be here anymore.” I hear the voice loud and clear. The booming sounds of the music festival are no match for the blaring voice in my head. Just moments ago, I was dancing with my friends, entirely wrapped up in the joy of the moment. Now, I’m leaving early and questioning the validity of my own existence. I wish I was confused – surprised, even – but this is my new normal.
For ten to fourteen days every month I feel like a completely different person. Hopeless, despondent, even suicidal. Until I don’t. Debilitating anxiety can have me in a regular state of panicked inaction, and soul-crushing depressive episodes mean I swap time with friends to lie in bed, which is sometimes about all I can do. Some months I call in sick or leave work early for fear of a crying outburst, or due to extreme fatigue.
Although I’ve always suffered from bad PMS since my periods started some twelve years ago, my realisation that I might, in fact, not be experiencing normal PMS didn’t arise until the beginning of this year, when my attentive (and possibly exasperated) housemate sent me a Tik-Tok video. In it, 27-year-old Ellisha Blake, known as the ‘pmdd girlie’ runs through her experience of Premenstrual dysphoric disorder (PMDD).
PMDD is a severe form of PMS (premenstrual syndrome) with intense symptoms leading up to menstruation including extreme anxiety, depression or suicidal ideation, headaches and muscle pain. While its causes are unclear, the NHS says it has been linked to hormonal or genetic triggers. It is believed to impact 1 in 20 women and menstruating people worldwide, with 70% of those diagnosed suffering from suicidal thoughts, and over 30% attempting suicide, a figure 31% higher than the average for suicide attempts.
Watching the TikTok video, I nodded along to almost every symptom Ellisha ran through, and everything suddenly clicked into place. For so long, I had dismissed the severity of my symptoms: almost every resource out there told me that varying degrees of PMS were ‘normal.’ While I battled with myself to just get over it, my mental health, relationships, and work life had taken a serious blow.
Dismissed and undiagnosed
Despite its prevalence and severity, women with PMDD wait on average twelve years for a diagnosis. Sufferers report being misdiagnosed and dismissed by health professionals. Sadly, this is unsurprising, especially when the disorder was only recognised by the World Health Organisation in 2019. And, because there is still no known cause of PMDD, when they finally have one, treatment for the disorder remains insufficient. The problem is, as with many women’s health issues, diagnosis can be a challenge. On top of the usual barriers women face to being taken seriously by medical professionals and a lack of targeted funding for research into the condition, it isn’t such an easy condition to confirm. There’s no simple test that can be done. The diagnostic process can take two to three months, with doctors relying on patients self-reporting their symptoms and following a seven-point checklist.
“PMDD is a combination of hormonal and mental health issues which manifest as a result of how the brain responds to the natural hormonal changes during the menstrual cycle,” explains Dr Fatumina Said Abukar, PMDD sufferer and doctor of Regenerative Medicine. “Diagnosing it involves tracking your symptoms over at least two menstrual cycles to spot the right patterns and see if they consistently show up before your period and disappear once it starts.” It’s likely your doctor will ask you to keep a daily diary of your mood and physical symptoms to nail down the diagnosis, she adds. Dr Abukar flags that symptoms typically begin a week or two before your period starts, during the luteal phase of the cycle [second half, following ovulation].
For 34-year-old Ariel Watson, a communications worker based in San Francisco, PMDD became debilitating. “My mum would tell me, “your PMS is really bad,” but there was no conversation of what we should do about it, or why is it so bad,” she tells me over a transatlantic video call. “I don’t put that on my mum, none of us really knew much about it,” she says. Ariel describes how after 14 years of trips to “the emergency room for panic attacks, to gynaecologists and urgent care doctors”, she finally received a diagnosis. “A lot of people were really dismissive,” she says.
Finally receiving her diagnosis was a “turning point” for Ariel, who found a psychiatrist who not only treated PMDD, but suffered from the disorder herself. “Her [the psychiatrist’s] help was the most supportive I’ve ever had in my life – her empathy was pretty unique,” she tells Cosmopolitan UK.
Ariel’s psychiatrist recommended an antidepressant, which she says improved her emotional symptoms: “it really calmed me down”. However, after noticing some long-term side effects, Ariel decided to come off the medication a few months ago. Despite this, she found the course of medication had a positive lasting impact. “I still have the symptoms, but I’m self-aware, and I feel like myself more often,” she says.
For many women with PMDD, diagnosis is only the start of the battle. Treatment options are limited, with two typically given: the hormonal contraceptive pill, or antidepressants (SSRIS) taken in the second half of the cycle, alongside recommended lifestyle changes, like exercising more and following a healthy diet. Research supporting the efficacy of hormonal treatments remains mixed, whilst SSRIs do have stronger evidence in treating PMDD in some people.
Following her own battle, Ariel is working on a comprehensive app for PMDD. RedTent, due for release in December this year, will support women to track their cycle and moods – with the goal to bring diagnosis waiting times down from twelve years to three months. It will also host a community centre and, says Ariel, primarily be “a really safe space.” And she’s not the only sufferer taking matters into her own hands.
Taking control
It’s a sunny day in a west London park and a dozen women in their twenties, armed with snacks, soft drinks, and plenty of suncream, are lounging on picnic blankets and soaking up the warm weather.
This is first meet up of The PMDD Network, an ever-growing collective of over 60 members founded by Ellisha to provide a support space for sufferers to come together, discuss symptoms, share tips and listen. After a big hug on arrival from a smiley Ellisha, any nerves I might have felt about meeting new people vanish and we skip the small talk and dive straight into all the details. I quickly feel accepted – it’s affirming to be with people who get it, because they’re going through it too. Although I wouldn’t wish this disorder on anyone, it feels amazing to know that I’m not struggling alone, that there are others like me. It’s a full day of events, and the packed schedule begins with a series of guided nervous system-regulating exercises and a journalising session with Sandra Maniraguha, a life coach specialising in anxiety management.
Over a cup of chilled lemonade, I get chatting to Georgia Grace Gavin, a 26-year-old private carer based in North London. She tells me how she used to argue with her boyfriend every month “like clockwork” before it took such a strain on the relationship she began to question if her symptoms were normal. “I would be really high, really low quite quickly”, she tells me. Like me, Georgia thought her symptoms were ‘normal’ for a long time – missing out on years of potential support. “I thought I was just emotional, that I was over the top. I put it down to my personality,” she says. Eventually, she called the GP, who suggested the contraceptive pill – but this wasn’t an option for Georgia, who previously suffered from depression whilst on hormonal contraception.
For her, the network has been a life saver. “It’s so important having people to validate how I feel. It’s a sense of community, I feel like I belong,” she says. “If I’m having an off day, seeing someone talk about their off day, and how they’ve overcome something, makes me feel so uplifted.”
This was Ellisha’s drive behind creating the collective. “I wanted to bring things offline and into reality, to connect and create that community to support each other,” she says. “I’m not a doctor, but what I can do is make people feel seen, heard, and held, and that’s what the meet-up was. There’s little support out there for PMDD, and it’s so hard to feel seen because of so much medical gaslighting.”
The PMDD Network isn’t the only group taking matters into their own hands when it comes to dealing with this condition. Other support spaces exist on Facebook. For Ariel, it has been these online communities that have saved her during particularly difficult times. “Sometimes, when I just don’t know what to do, I’ll read posts in community spaces and be like, okay, I’m not crazy,” she says. “It can feel like it’s just me, and I’m isolated, and these spaces remind me that this is happening to millions of women.”
Dr Kimberly Ciardella, a California-based psychotherapist with years of experience both treating and living with PMDD says she has seen “firsthand how transformative community support can be. For those of us navigating PMDD, community support isn’t just beneficial—it’s essential,” she says. In her patients who have found such groups, she says “their anxiety decreases, they develop more effective coping strategies, they become more motivated, and they begin to feel a sense of control over their lives again.”
I’m only two months into being a member of The PMDD network, and I’m already seeing the benefits: these past few months, whilst still hard, have not been as hard. That debilitating feeling of isolation is not so strong, because with just a few taps of my phone, I’m connected to sixty other women who understand entirely what I’m going through. Sometimes we encourage each other to get out for a walk, sometimes we give others that permission they need to just lay in bed, and sometimes we pick up the phone to empathise with someone having a particularly dark day. This new, groundbreaking space makes the weight of this life-destroying disorder just a little easier to carry – and I couldn’t be more grateful.
Of course, community support alone is not enough to treat PMDD, Dr Ciardella warns: “without the right interventions, community support alone will not be enough to manage the more severe symptoms.” For me, GP support ceased when I declined the pill or antidepressants. Like Georgia, I’d suffered depression on the pill, and, whilst being the right choice for others, I’ve committed to trying out other natural treatments before I go for SSRIs.
Treating my PMDD is an exhaustive process of trial and error. I rigorously track my cycle and take an ever-growing collection of vitamins and supplements that have so far helped ease symptoms like bloating, and fatigue. I’ve resigned myself to cutting out caffeine, and booze (annoyingly noticing a huge positive impact from this), and regularly practice yoga.
The PMDD network has been a gamechanger for me – but people with PMDD shouldn’t have to take matters into their own hands. In the face of these challenges, in these gaps in information and resources, and through our shared suffering, at least we have each other. As Ellisha puts it, “PMDD is such a heavy thing to have, getting positive things out of it can make things feel a bit lighter, and less overwhelming.”
If you’re struggling, text Shout on 85258, or call Samaritans on 116 123, any time, day or night. If your life is at imminent risk, please call 999 for immediate help.
You Might Also Like
