My healing journey through PMDD (Premenstrual Dysphoric Disorder)
If you have already navigated my blog, you might know a bit about me, where I come from and what I like and don’t like… but I’ll introduce myself again, just in case you haven’t.
I am Francesca, Italian by birth and a worldwide citizen by experience. I travelled a lot during my twenties and lived in many cities around the world: Modica (Sicily), Pisa, Florence, Rome, Barcelona, Houston. I am also a mum, a wife, a daughter, a granddaughter, a sister, a friend, a co-worker and much more… and, like you, I am also a woman who juggles all of the above into one single life every day!
Seven years ago, together with my husband, I decided to move to the UK. We were both driven by our natural curiosity to explore the world and wanted a new life experience and new exciting opportunities. Fascinated by the English culture and lifestyle, the UK seemed an obvious move.
In 2017 I became a mum and, since then, my life has been transformed in every single part. Not just the practical things (like lack of sleep, time and silence, just to name a few), but I have also been feeling a profound transformation inside me as a woman. Motherhood has been so far the most unique, complicated learning experience of all my life, and has changed every single cell in both my body and my mind. I am not entirely sure how much of my old self has left or just evolved, but I am so grateful for this journey, which I wish I had done before.
Why am I telling you about my motherhood experience? Because that marked the beginning of my PMDD and, with it, my personal healing journey.
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Motherhood and the beginning of my PMDD
After my beautiful daughter’s birth, I was so confused and overwhelmed that I had not truly realised what was happening around me. I’m not sure if it was the birth trauma I had experienced and the resulting PTSD or the lack of sleep and time for myself, but I spent the first year in a sort of limbo, not being completely present. In the beginning, I thought it was normal: after all, I was a new mum, I had no support because all of my (and my husband’s) family lived in Italy, and my life had been completely upside-down.
They say: “It takes a village to raise a child”, and there is a reason for that!
A year went by, and I got my period back. From then, things only got worse. I couldn’t regain my energy or vitality. I was always tired, beyond any normal limits. I experienced huge levels of fatigue, memory loss, abnormal migraines; my brain was constantly foggy. I was losing my interest in any daily activity, even those things that I used to enjoy the most. Some days I felt the need to sleep as never before in my life; I could literally fall asleep on the sofa while playing with my little baby girl or while walking through the aisle of the supermarket.
Waves of depression and anxiety depleted me from the inside, leading me to a feeling of hopelessness.
I felt something was wrong with me but didn’t relate my discomfort to my period. I kept blaming motherhood for the tiredness and fatigue; the ‘baby brain’ for the memory loss and the brain fog; the birth trauma for the anxiety and depression. However, there was one thing I could not find any explanation for… a sudden and new feeling that I had never experienced in my life before, a feeling that I didn’t know how to manage and get rid of, a stranger that I struggled to name. Then I figured it out: it was RAGE!
I had always been a quiet and patient person, always thinking before speaking out loud and very rarely having irrational fits of anger. Not that I had never got angry or felt irritable (I am human, after all!), but I had always had control over my emotions and found a way to calm down.
Well, this was not the case anymore. And I had no idea what the hell was happening to me! One day I felt so peaceful and like an angel; the next one, I suddenly turned into a crazy devil for insignificant or no reasons, and I could not explain why. Suddenly, I felt like a fire was burning in my chest and felt the need to scream and explode.
My husband hardly recognised me and struggled to understand. It was new to him too. Communication had always been great between us and maybe the strongest point in our relationship. We had always talked about everything: the good and bad things. We had always been open about our feelings and emotions and been able to find a compromise when in disagreement.
But now… oh now, it was a different story! Some days (or even weeks) I was fine, and when things seemed to go in the right direction… boom! I exploded in a completely irrational burst of anger.
The rage and the anger were definitely the two elements that convinced me that something was not right with me. They were not part of me, and I felt like someone else had taken over my body and mind, and I had no control over them.
The weird, cumbersome monster that comes uninvited
Then, one night, I had my lightbulb moment totally by chance. I was in bed scrolling through Facebook, and my attention was captured by a thread in a mums’ group. They were talking about feeling tired, depressed and uncontrollably angry about everything… wow! That sounded like me! I kept following the thread and, at some point, one of them mentioned PMS and PMDD. Everybody seemed to know the meaning of those never-seen-before acronyms, so I googled them.
PMS = Premenstrual Syndrome. I knew all women experienced some forms of discomfort (breast tenderness and vaginal pain, irritability and mood swings) for the few days just before the cycle. Still, I had no idea that there was a name for it and that it was recognised as a syndrome… I know, very naive!
PMDD = Premenstrual Dysphoric Disorder. I had no idea what it could be. Wikipedia gave me the answer. As I read through the definition and the list of symptoms, I was blown away. I had every single symptom on that list: not just a few – all of them! And, for the first time, I had found a single condition covering all the discomforts I was experiencing.
Was PMDD the answer I had been eagerly searching for over the past months? I honestly believed so…
I was not sure how to feel: confused, relieved or worried. I certainly remember feeling a huge sense of accomplishment: all of the questions and doubts, all of my discomforts, had a name now. After months and months of guessing and researching, of doubting myself and thinking I was crazy, after all of that time, I had arrived at a conclusion. And I knew inside myself that PMDD was the answer. My instinct spoke out loud for the first time in a while.
Being in “Doing” mode and forgetting about my feelings
As I usually do when I have a problem, I immediately started searching for a solution. I threw myself headlong into the situation without even thinking of my feelings and emotions. I put myself in what Mark Williams and Danny Penman, in their book Mindfulness, A practical guide to finding peace in a frantic world, define DOING MODE.
[…] the characteristics of ‘Doing’ mode include judging everything, comparing the way things are with the way you want them to be and striving to make them different to how they actually are. They include being on automatic pilot much of the time, getting lost in thoughts that you take too literally and personally. Doing mode includes living in the past or future, and avoiding what you don’t like. Finally, the Doing mode sees the world indirectly, through a veil of concepts that short-circuit your senses so that you no longer directly experience yourself and the world.
Williams, Prof. Mark. Mindfulness: A practical guide to finding peace in a frantic world (p. 105)
I didn’t pay attention to either my feelings or my emotions, and I didn’t listen to my inner voice. I didn’t stop for a minute to think about myself and my life, and figure out how I would manage my newly discovered condition. I thought I could simply add it to my already busy daily work/family schedule and simply find a way to cope with it.
I would have paid the consequences of my naivety and stubbornness later…
Being in “Doing” mode translated into “Problem-solving” mode, which meant reading all I could about PMDD and figuring out a solution. Overwhelmed by the amount of information I found, I decided to start from the basics and stop there until I understood better what this condition was. I also decided to rely on a very small number of trusted sources: NAPS UK and IAPMD. I read the National Guidelines by NAPS UK and used the IAPMD website for handy resources and tools like the symptom tracker, self-care plan and action plan.
At that point, I had given a name to my multitude of unpleasant symptoms; I had found resources and guidelines to use and follow. All I needed was a proper diagnosis by a medical professional. Therefore, I tracked my symptoms for the following two cycles, to prove the cyclic nature and get evidence to bring to my GP to get a PMDD diagnosis.
My first (bad) experience with medical professionals
Going to the GP was my first (and not last) bad experience with a medical professional during my PMDD warrior career. He dismissed me very quickly (after googling PMDD himself!) by saying that there were only three options available to me:
- the combined pill – which he could not prescribe to me because of my migraines
- CBT (Cognitive Behavioural Therapy) – which would have taken a few months to get an appointment for
- SSRI (Selective Serotonin Reuptake Inhibitor) – which was the easy and quick option immediately available
I left the GP surgery with my new piece of paper, which promised SSRI being my salvation. I was puzzled and confused. I didn’t know if I should be happy to finally have treatment or feel defeated instead. I felt hurt and not taken seriously; my feelings and emotions had been diminished. I felt stupid, terribly stupid. My daily symptom tracker had been useless; the GP didn’t even look at it! I know now that there is a proper name for this: GASLIGHTING!
The first months
Anyway, I didn’t go to the pharmacy that day. I decided that antidepressants could not be my first line of treatment. I wanted to address other things before trying SSRIs. So, following the National Guidelines by NAPS UK, I wrote down the following list:
- healthier lifestyle: diet, exercise
- stress management through yoga, relaxation and meditation
- counselling support
- CAM (Complementary and Alternative Medicine) therapies
- supplements
I had already started practising yoga the month before, and I wanted to try everything else on that list. (I saved that prescription for a few days, though… just in case I found myself hopeless in the middle of a PMDD crisis!)
The following months got better as I knew what I was dealing with, and tracking my symptoms was crucial in anticipating the hell weeks. It was summer, which helped too: a bit of sunshine, longer days, staying outside, early morning walks, meeting friends and playing at the park with my little girl… a great boost to my mood and energy.
A holiday in Sicily, my birthplace, was the icing on the cake for my mood. A slower life, morning walks by the sea, good food, sunshine, and support from family all helped my body and mind reconnect and go at the pace they needed to.
However, back home, it wasn’t too long before the stress came back; my life got back to the frantic routines I had left two weeks earlier and so did my fragile body and mind. But this time, it got even worse.
The relapse
October 2019 was one of the hardest months of my PMDD life: an unbearable and uncontrollable PMDD crisis led me to take some time off work. I had taken a day or two during my previous cycles when I couldn’t face the idea of staring at a screen, replying to emails and calls, meeting clients, and talking to people. But this time, it wasn’t a normal crisis, it was one of the worst ever, so I went to my GP asking to be signed off work for two weeks. I remember feeling so guilty, like committing fraud. In fact, I had never taken a day off unless I was really in pain or physically impaired. And I knew that I was not well and couldn’t cope further, but strangely, I had this belief that my pain not being visible made it less valuable…
I thought in two weeks I would have been able to fix myself or, at least, I would have got some time to breathe and relax. What a naive thought! Back to work, and after a few days, I found myself in the same dark place I was in three weeks earlier. My body had already given up giving me any sort of signals and asking for help. Signals that I totally ignored until it was too late. My mind was so stubborn and blind that I didn’t see the limit and crossed it. Then it gave up too. I had undergone unsustainable levels of stress for too long, and both my body and mind protested.
Sunday night, 10th November 2019. I told my husband that I would not go to work the next week. He asked me if I wasn’t feeling good and wanted to take another day off. I replied, “NO. I won’t take a day off. I will take a month, or two, or three, or more… I don’t know how long it will take, but I am broken. I am completely broken”.
That Sunday night, I admitted that I was broken and needed help for the first time ever. I have never been good at asking for help, and I didn’t know how to do it honestly. But I knew I could not go on like that, and something had to change. I knew that it would be a huge turmoil, a steep journey, a bloody fight with (and against) myself. But it was time; it could not wait anymore.
The beginning of my PMDD healing journey
Acceptance
When I first found out I had PMDD, I threw myself headlong into “Doing” mode without giving it a second thought, without thinking of what I felt. I had skipped an essential step: ACCEPTANCE.
I naively believed I could manage it independently without asking for help. I could take my symptoms under control: all I had to do was follow the guidelines, try the treatments, and eventually, I would find one that worked for me and fixed that bloody thing. I could do it on my own; I didn’t need to bother family and friends. After all, it wasn’t the first time I was in a difficult situation; I had done it before. But I was wrong, totally wrong! Oh my god, was I wrong!!! No one can go through this alone, and no one should.
I had completely underestimated PMDD, and the monster made its voice heard louder.
At that point, I realised that there was one missing step in my recovery ladder, and its name was acceptance. After six months, I had not taken time to check on how I was feeling, and I had not accepted my condition yet. I couldn’t bear that it was happening to me (why me?). I couldn’t bear to live half my life. I couldn’t bear to lose my job, my marriage, my relationships. All my certainties were crumbling. I was crumbling, falling apart… piece after piece. I couldn’t bear all the other people going on while I felt like I was going further and further back. I was jealous. My already low self-esteem fell down underground.
It took me a while to accept my PMDD, and that was the first essential step of my healing journey. I am not sure at which point I started to accept it, but I believe that it all began when I introduced two magic words in my daily life: self-awareness and self-compassion. Through them, I learned how to acknowledge my feelings and emotions, needs and desires, and take time for myself when I most needed it, without feeling shame or guilt.
Acceptance is unstable, though: you think you got it, but then a crisis comes, and it wobbles again. You have to check on it sometimes, and that’s fine. It doesn’t make you weaker, far from it! It strengthens your self-awareness.
Two other things have helped me accept my PMDD. The first has been connecting to the fantastic PMDD community made of strong women on a similar journey: reading and sharing experiences has made me feel heard, understood, and not alone. The second has been writing my blog: sharing my personal experience and helping other women has given me a sense. It can’t all be for nothing! I feel like I channel my pain into something positive.
Navigating the storm
The beginning of the journey was steeper than I thought: it started with the worst two months of my PMDD life.
Due to my excruciating migraines, I could not take the combined pill, so I was advised to start the POP (Progestogen-Only Pill) as a first-line treatment for PMDD. This would block ovulation from happening and, with it, the PMDD symptoms. Well, little did I know about being highly sensitive to progesterone, which I found out two months later! Due to horrendous months of depression and anxiety, my mood was underground. I could not feel anything, either bad or good (not that I missed my PMDD, but at least it gave me ups and downs!). I had lost interest in everything around me. And everyone too. I had no desire to play with my daughter, spend time with my husband, go out, go shopping, anything! I was flat, completely numb. The situation was unbearable. My husband had no clue of what to do or how to help, as I didn’t show any signs of being present.
Eventually, thanks to my PMDD journal, I linked my emotionally depressed state to the pill, realising that my numbness started just a few days after taking it. I immediately stopped it without even consulting my GP. After a few weeks, my period made its appearance, and I finally felt myself again. It was a new birth for me; I remember crying tears of joy and gratitude while realising that Francesca was still alive. She was just buried under tons of synthetic hormones.
After the failure of the POP, that year was all about trial and error. CBT, a nutritionist, supplements, SSRIs, blood and urine tests (and lots of money too!). All of them obviously supported by yoga, meditation, essential oils, improved sleep quality, etc.
Eventually, I took a whole year off work, in the middle of which there was also an unexpected global pandemic! I’ll always be grateful to my employer, who was so open-minded and understanding that I struggled to believe it. (Clearly, I must have done some wonderful job during the previous years.)
When I first decided to take some time off work and decided to take care of myself, I deeply believed I was being weak. I considered myself a failure for not being able to cope and having to ask for help. A clear sign of weakness… at least, this is what I was brought up to believe since I was a young girl. Then, a good friend of mine told me I had been brave for recognising my limits and taking time to look after myself. She said it was not an easy thing to do, and it took courage to do so. I remember being speechless. I had never considered the situation from that point of view. I had always been hard on myself, set high standards, and seen myself as a failure for not achieving them. That conversation was a turning point for me as I started changing my point of view and practising what, later on, I found out to be a necessary ingredient for my healing journey… self-compassion.
Thanks to the amazing PMDD community, I could regain trust and confidence and see the light at the end of the tunnel. A community made of fantastic women who are on the same journey, who share their stories, their ups and downs, and constantly support each other unconditionally.
And although I had spent an entire year living in the dark, I feel I have been lucky to have found out about PMDD relatively soon. I am conscious that lots of women are left undiagnosed/misdiagnosed for years. Giving a name to it was relieving; it was a proper validation, and I could finally prove that it was not all in my head.
My journey has not ended yet. As I walk along the bumpy path of it, I try different things, I go through the ups and downs, and I discover new things about myself. I am conscious that it is a very long and steep journey, but I am also conscious of how much my body, mind and spirit were disconnected initially, and how far I have come since then.
Sources
[1] Wikipedia https://en.wikipedia.org/wiki/Premenstrual_dysphoric_disorder#DSM-5.
[2] Free Meditations from Mindfulness: Finding Peace in a Frantic World, website of the book – http://franticworld.com/free-meditations-from-mindfulness/.
[3] National Association for Premenstrual Syndrome (2018) Guidelines on Premenstrual Syndrome.
[4] IAPMD (International Association for Premenstrual Disorders) – https://iapmd.org/about-pmdd/.