By guest writer Jenny Fairhurst
For most of us who have a period, its arrival is a mild but accepted inconvenience in life. For those with Premenstrual Dysphoric Disorder (PMDD), however, it’s a cause for celebration, as it signals the end of a hellish one-to-two weeks which come without fail every cycle.
Like many people, I had never even heard of PMDD before the birth of my second child. I had always had a pretty ‘normal’ experience of periods. However, when my cycle returned after I had my daughter I didn’t feel like myself for significant chunks of time… I just felt ‘weird’ and a bit lost. My mood was unpredictable, I was finding myself uncharacteristically hopeless and lacking in joy and feeling distant from my family. I had this recurring feeling of observing my family from within a glass cage when we were all together doing regular family stuff. I was looking on, but at a distance, I couldn’t connect with them or the feelings I knew I should be feeling watching my kids full of joy and fun. I felt dead inside. I was so irritable, snappy and kept exploding at my partner and children for the smallest things. Within a few weeks, I would feel like myself again, only to slip back into that feeling a few weeks later. I felt like I had become a Jekyll and Hyde character with a split personality – I was becoming hard to live with, and it was affecting my ability to remain in control of myself at home and work.
It got to the point where I felt like I was losing myself, and knew that there was definitely something wrong, so I went to the doctor for some answers. Unfortunately, female reproductive health and hormonal issues are extremely under-researched and poorly understood by the general medical population, and I was told that it sounded like “normal hormonal mood swings” and offered the pill to stop my cycle. I left feeling dejected, unheard, and questioning my own experience. I started doing some research myself, and when I first read about PMDD, it was like a lightbulb moment. I remember tears filling my eyes, as I turned to my husband and said, ‘This sounds just like me, I think this is what I have’. The relief of what I was experiencing having a name and being a recognised condition was game-changing. I wasn’t losing my mind, I wasn’t making it up. My experience was real, and I wasn’t alone.
PMDD is often referred to as ‘severe PMS’, but for many ‘PMDD warriors’ (a term used by many of those who live with PMDD), it’s a woefully inadequate way to explain this chronic and life-changing condition. PMDD is caused by an adverse reaction in the brain to the normal fluctuations of hormones which occur in people who have a natural menstrual cycle. It means that when your body is doing its thing, producing oestrogen and progesterone as it should, extreme and unexpected reactions are triggered, which can make life feel like a never-ending rollercoaster. A simple way to think of it is your body being allergic to the hormones coursing through your veins each cycle. Most people who suffer from allergies spend their life avoiding what they are allergic to – that’s not so easy when it’s something your body is producing every month. Typically, PMDD symptoms kick in during the second half of the menstrual cycle, post-ovulation (known as the luteal phase) and, depending on an individual’s cycle length, can last between one and two weeks. Some people spend the entire luteal phase in the PMDD window (often referred to as ‘Hell Week’), whereas other people’s symptoms progressively increase throughout that second half of the cycle. The onset of the period marks the end of this phase and generally brings relief from symptoms, if not immediately, then within a few days. This constant cycle of swinging from experiencing no symptoms to intense ones every month, can be exhausting and leave an individual feeling like they are living half a life. Many of the symptoms of PMDD are similar to PMS, though tip into the category of extreme as they have a significant impact on day-to-day life. PMDD is to PMS as a migraine is to a headache.
Physical symptoms of PMDD can include headaches, migraines, insomnia, fatigue, sensory overstimulation, changes to appetite, breast tenderness, muscle & joint pain, bloating and brain fog. Psychological and emotional symptoms of PMDD include drastic mood swings, irritability, tearfulness, rage, depression, feelings of worthlessness, hopelessness and often suicidal ideation. In fact, there is a 30% attempted suicide rate within those who suffer from PMDD – living with this condition can sometimes seem completely unbearable. All of these symptoms – which reoccur every cycle – can make it difficult to conduct everyday activities like working, parenting and maintaining healthy and balanced friendships and relationships. For many people living with PMDD, the ability to engage in social interactions can become extremely challenging. These lists aren’t extensive and an individual’s experience can vary from person to person – there is no one size fits all with PMDD symptoms, and even less so with treatment.
One of the most effective ways to identify PMDD is to cycle track. This means recording symptoms each day of your menstrual cycle to identify patterns and recurring symptoms at the same stages of the cycle each month. You can track both physical symptoms (e.g. cramping, bloating, headaches, acne breakouts, fatigue and energy levels) but also emotional/mood and psychological symptoms. It’s amazing to see what feelings can be related to hormones, not just the obvious ones like irritability or feeling teary – I once recorded feeling ‘unsupported’ on the same day of my cycle for two consecutive months. Being aware of this makes me able to assess my emotions and responses. While I don’t dismiss them, (as they are still valid) I can view them through the lens of knowing that certain feelings are being ‘heightened’ due to where I am in my cycle at that time. There are multiple ways to cycle track – phone apps which help you record, downloadable templates online or simply noting down how you’ve been feeling at the end of each day. I highly recommend this process for anyone with a cycle, not just those with PMDD/suspected PMDD as it’s extremely insightful to monitor how our fluctuating hormones can be affecting us.
PMDD affects 1 in 20 women & AFAB (assigned female at birth) individuals, but it’s shockingly unknown within the medical community, which is a contributing factor to the average time for diagnosis being 12 years, and a common misdiagnosis of fast cycling Bipolar disorder due to the cyclical nature and changes in character as a result of the condition. The trigger for the condition is often a hormonal event – most commonly the onset of periods, a pregnancy, or menopause. This means that many live with PMDD their whole lives, from as early as their teenage years, while others only begin to experience these symptoms at the onset of perimenopause as their hormone levels change. For me, it was my second pregnancy with my daughter (my first child was a boy) where something changed in the way my body deals with hormones. I knew in myself during this pregnancy it felt different; I felt very sensitive to the surges of hormones that come in stages throughout pregnancy.
In the same way the symptoms of PMDD vary from person to person, the treatment options which provide relief also differ. For some, the use of the contraceptive pill to switch off the menstrual cycle and stop ovulation can be effective, for others SSRI (Selective Serotonin Reuptake Inhibitors) a form of antidepressants can help balance out some of the roller coaster in symptoms in the luteal phase. Sometimes, the only route to relief is to completely switch off the reproductive system and remove the fluctuating hormones from the body, which can be achieved via either chemical menopause using drugs, or surgical menopause, through a full hysterectomy and/or oophorectomy (where the ovaries are removed). Either route which triggers menopause is not one to be taken lightly and requires some level of HRT to ensure a baseline of the hormones which the body requires to stay healthy, but at a consistent, low level that shouldn’t trigger adverse reactions. For some people, it becomes a choice between fertility and having children, or being able to function and live a normal life not plagued by PMDD symptoms.
Around 12 months after my initial appointment with the first GP I went back and requested a different female doctor. Armed with the knowledge about PMDD and going in with the ‘I think this is what I have’, angle, I was lucky that the doctor not only was familiar with the condition, but that she was in complete agreement with me that PMDD was the likely cause of my symptoms. She referred me to a gynaecologist for a consultation ASAP and has supported me for a year since my diagnosis with regular reviews and monitoring of medication. For me, the course of treatment that has helped manage my symptoms is Fluoxetine (Prozac) which is an SSRI. Initially, this was prescribed for just the luteal phase of my cycle, but as I am equally sensitive to the oestrogen in my body prior to ovulation (something not everyone with PMDD experiences), I find a daily dose is most helpful for managing symptoms across the whole cycle. While the medication doesn’t completely stop symptoms, I find it creates a bit of ‘space’ in my head, for me to manage my reactions and responses, which gives me back a little control. I can rationalise reactions and emotions more, which helps me avoid some of the destructive reactions and behaviors which PMDD can cause. It also stabilises the drop in my mood, so it’s not quite as significant a crash. It makes me feel a little less sad on the days I feel sad.
Getting a diagnosis and having an explanation for what was happening to me was a huge relief but it’s not been an easy journey – I was off work for seven months while I found ways to manage symptoms, and while they are still there, I’m generally more in control. Though I still deeply feel that crash into Hell Week, my medication means it’s not so intense and I have an extensive list of coping strategies which I can roll out to help me manage day-to-day life more effectively. Acupuncture, CBD oil, a host of supplements and vitamins all factor into my routine. I’ve been able to successfully return to work and, with some adjustments in my role, have been able to add value to my team and enjoy my job again through managing my workload and activities based on my cycle. That intense conference call where I need to be confident and bring my A-game? Not one to book during my luteal phase! I’ve also found coping strategies to use at home, including retreating away from social scenarios, having downtime away from my partner and children when I’m experiencing sensory overwhelm, and accepting the need to set boundaries and protect my time and space when I need to. I’ve learnt that it’s ok to say ‘no’ and that sometimes you need to take it easy.
Talking about a chronic health condition can be extremely difficult and PMDD is particularly tricky because it’s so unknown and often gets dismissed as ‘just’ PMS, even by doctors and the medical community. Also, because it’s a ‘female’ health issue and there are still so many taboos around this topic, people still don’t feel comfortable talking about hormones and periods. While there have definitely been some small steps to normalise and open up discussions about female reproductive health, there is still a long way to go. It’s weird; I can happily talk to people within the PMDD community about my symptoms, but talking to friends and people who know me in real life feels awkward and uncomfortable.
Unfortunately, there is still an ongoing belief that ‘women’s problems’ are simply something we have to live with, to tolerate, when that’s just not the case. I can guarantee that there will be people who read this and have the same ‘lightbulb moment’ I had and realise that their experience or that of a loved one is not something that should just be accepted as part of being female/AFAB. If I can offer one piece of advice for anyone who feels this way, it’s to trust your judgement – you know when something isn’t right, so advocate for yourself, demand to be heard and get the support and treatment to help improve your quality of life.