Co-founder of Vicious Cycle, Laura Murphy, writes our beginners guide to the hugely distressing, under-diagnosed menstrual disorder - Premenstrual Dysphoric Disorder (PMDD).
1 in 20
PMDD is thought to affect between 3-8% of women and AFAB individuals – that’s around 1 in 20!
Premenstrual Dysphoric Disorder is a cyclical, hormone-based mood disorder with symptoms arising anytime between ovulation and the end of your period (the luteal phase).
Symptoms can include: feelings of sadness or despair or even thoughts of suicide, feelings of tension or anxiety, panic attacks, mood swings, or frequent crying, lasting irritability or anger that affects other people, lack of interest in daily activities and relationships, trouble thinking or focusing, tiredness or low-energy, food cravings or binge eating, trouble sleeping, feeling out of control and sometimes physical symptoms, such as bloating, breast tenderness, headaches, and joint or muscle pain.
PMDD is a suspected genetic disorder with symptoms often worsening over time and following reproductive events including ovulation, pregnancy, birth, miscarriage, and menopause. Some people suffer from it from puberty – for others it is triggered along the path of their reproductive life, so all hormonal interruptions such as hormonal birth control, having children, miscarriages, gynaecological procedures, perimenopause etc can all trigger PMDD.
In 2016, researchers at the National Institutes of Health (NIH) found that women with PMDD are more sensitive to the effects of sex hormones oestrogen and progesterone, due to a molecular mechanism in their genes.
Basically your hormones are normal (it is not an imbalance) but your body’s reaction to those fluctuations is abnormal. The fluctuations are the same as someone who does not have PMDD, but you have a sensitivity to those changes as they rise and fall.
15% of sufferers attempt suicide or take their life…this is no PMS.
Diagnosis is made by tracking your cycles (the Me v PMDD app is a great way to do this) for a minimum of two cycles. There is currently no blood or saliva test to confirm PMDD, yet blood tests should be done to rule out other conditions.
Getting a diagnosis can be a struggle as SO many doctors have never even heard of PMDD. I was told many times, ‘It is just PMS. Every woman suffers from it so you just have to learn to live with it.’ Trust your gut. If you KNOW it is far worse than PMS, then stand firm. Track your symptoms to show the pattern, print off the UK treatment guidelines and advocate for yourself. Take someone with you for moral support if you think it would help. If that doctor won’t help – then onto the next one!
There is (sadly) no one size fits all treatment. First line treatments are lifestyle changes, supplements and then SSRIs (continuous or just in the luteal phase) and/or hormonal contraceptives. However, many PMDD folk cannot tolerate birth control, so it’s hit and miss.
The next step is hormone therapy – oestrogen gels or patches in conjunction with a progesterone ‘add back’ such as the mirena coil or vaginal pessaries to protect from hyperplasia.
If there’s no success from that, then GnRH analogues are used to put you into a temporary chemical menopause – usually for 6 months - to test your reaction. After that then Total Hysterectomy with Bilateral Oophorectomy (ovaries out too!) is usually the next step – removing the menstrual cycle, thus removing that monthly fluctuation. This is the final step, and one that is only taken in severe cases and when all else has failed.
For the latter treatments, it is important to be under a specialist that understands PMDD, you can look for one here.
The world’s first PMDD specific medication is currently in clinical trials, sepranolone, which is very exciting for future generations.
PMDD is classified as a mental illness in the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5), but is not treated with psychological medications (other than SSRIS as a first line treatment) but via cycle suppression under the care of a gynaecologist/specialist.
Vicious Cycle: Making PMDD Visible
In 2017 we started the Vicious Cycle campaign – a patient led awareness project. Our aims are to raise awareness in the general public and health care professionals, and to raise the standards of care for those with PMDD.
Around 90% of sufferers are thought to be out there, undiagnosed.
Despite affecting so many people, neither GPs, gynaecologists nor psychiatrists are trained to recognise PMDD. Mental health professionals do not ask women to track their periods and so many are misdiagnosed with rapid cycling bipolar and are wrongly medicated.
Everyone one involved in the project is a sufferer and knows exactly how it feels to be undiagnosed and scared – we want to find those people out there and give them their best chance at getting the right help and support. Women are suffering for years and then finally stumbling across PMDD, often by chance, having had a ‘lightbulb moment’ where everything starts making sense. This is not good enough.
We are building a website, www.viciouscyclepmdd.com, full of awareness materials and printables and hope that others will get involved in doing their bit!
PMDD sits firmly in the middle of menstruation and mental health – two historically stigmatised areas. Times are changing, but we want to accelerate the process. We are working with IAPMD (International Association for Premenstrual Disorders) to ensure quality information is put out there into the public.
For anyone who may recognise these symptoms in themselves or others, where can they go to get further support?
Ideally, find a support group – type ‘PMDD support’ in the Facebook search bar and you will find loads of closed groups. If you are in the UK, then check out the UK PMDD support group. It helped me SO much.
If you have questions about PMDD, want information, or want to talk to someone that understands, then you can schedule free, confidential sessions with the IAPMD (International Association for Premenstrual Disorders). Their peer support team is staffed by people who have PMDD, they are trained and totally understand.