by Danielle
I remember starting my first period,
it is one of my earliest and most tangible memories.
I was eleven, I was wearing a white miniskirt, and I was on holiday in Mallorca and out for the evening with friends and their parents from our apartment block.
The rest of the evening comprised of stuffing great wads of scratchy toilet roll into my pants and waddling around whilst trying to hold down this rising tide of panic, waking up my dad to ask him if I was dying and my mother waking up and attempting to demonstrate how to insert a tampon by undertaking a strange contortion that required clutching onto a sink whilst supporting my leg on the side of a bath.
This strange manoeuvre conducted late in the evening meant that I did not feel comfortable using anything other than a sanitary towel until I was about 16. A pretty standard story of a first period.
But what stands out to me as I write this, 23 years later, is how I felt the next morning. I distinctly remember waking up, opening my eyes, and feeling different. Feeling hollow, feeling like I wanted to stay in the narrow bed in my grandparent’s holiday apartment in Mallorca, with the same beach towel nailed up next to the bed for decoration that I had slept under since I was born, like if I stayed there nothing would have to change.
I remember this new feeling in my chest - it was itchy, it felt small, irritating, narrow and fluttery, like a gang of pissed off parrots had taken root in my chest and were having a delightful time sorting out their issues using the walls of my chest to bounce off. I remember when I did get up, I felt I needed to wear a plain and dark coloured swim suit. The bright colours of my usual choices felt offensive, garish and hard to engage with. I stayed inside.
I didn’t want to enjoy the rest of my holiday, it didn’t make sense to me now. My world had shifted.
Now I know that this was my first experience of premenstrual dysphoric disorder (aka PMDD), my first experience of my body reacting badly to the normal hormonal fluctuations that go alongside our menstrual cycle, my first experience of low mood and anxiety.
I’m going to skip us through the majority of my teenage years, they were chaotic, full of fraught normal teenage mood fluctuations alongside the ever present simmering succubus of PMDD, which at this point still remained a long way from being named or recognised.
I experienced years of restricted eating and bulimia, developed an obsession with endless sit-ups undertaken in stomach aching sets of 500 with my feet hooked under my childhood bed. I thought I was massive, I felt huge, I felt uncomfortable in my skin, my emotions made no sense, I struggled to understand why I was fine for a week or so and then boom, this crashing sense of doom, of heaviness or pain. I resorted to self-harm through cutting when it bubbled up to a cesspit of boiling rage that made my heart hurt and my brain feel like it was on fire.
I made bad choices, I struggled to make and retain friendships or relationship. I have supportive parents. I remember vividly the feeling of humiliation at being made to see various counsellors and therapists, at finding out my mum was attending a group for parents of ‘difficult teenagers’.
Although I felt like I hated her for that at the time, adult me loves her for this, for her bravery at going out there and seeking support for herself when she needed it. I respect her choices enormously now.
At 19 I was admitted for my first spell at an inpatient mental health facility. I had been using illegal substances to attempt to manage my symptoms for years, this coupled with experiencing a psychotic episode attached to a delusion that I was not allowed to sleep until a new pope had been appointed after the pope of 2005’s death. This lack of sleep and cocktail of substances culminated in an inability to function.
Being an inpatient
Enough was enough, I checked myself into the Priory. I was there for approximately 3 months and diagnosed with a variety of misdiagnoses, and pumped full of a variety of chemicals that left me either wildly elated or literally dribbling in a corner unsure of who or where I was.
I did not make the most of this opportunity. It continued to confuse me wildly, for some of the time I was there, I was utterly fine, unable to access the other part of life, the painful part as I felt great. Then, when I now understand that I would have been in my luteal phase and experiencing PMDD symptoms I was too lost in fatigue, physical pain and brain fog to be articulate myself and participate in the treatment offered.
Fast forward another 18 months and I found myself back in that same hospital, which smelled exactly the same, a smell that I can still recall vividly now as I sit and write this - stale coffee and freshly cut grass mingled with the ever present smell of cigarette smoke that clung to all of us as we sat smoking away the hours.
This time around my experience was more helpful. I was diagnosed with bipolar, a diagnosis that does very closely mirror the symptoms of my PMDD and began to build up an arsenal of tools I could use to live and thrive within a life whose nature was so cyclical and its only consistent was found in that cyclical ever changing cycle.
I left there after about 4 months and life continued. Throughout all of this I had ticked those now arbitrary feeling societal tick boxes, finished my education, undertake a degree, had relationships, experienced real joy, and traveled the world.
Life plodded along in its usual confusing way for many years, feeling fine, feeling rubbish, feeling fine, feeling rubbish, repeat in roughly 2 week cycles until about 6 years ago when it all started to feel unmanageable again.
I’ve often heard people using the word warrior around those who experience PMDD, for me that word has only recently start to crystallise and resonate in my brain, for me during this period I felt more like a pit pony, doggedly plodding on whilst perpetually yoked to a heavy weight that over time made me feel like my shoulders were sagging.
At this point I booked myself a doctor’s appointment, because it suddenly dawned on me, not everyone else feels and experiences constant intrusive thoughts of death and suicide for two weeks before their period, not everyone needs to spend days in bed due to fatigue, brain fog and the damn near impossibility of staying awake, just because they were in their luteal phase.
My doctor listened to this, told me that this was just normal PMS and he furnished me with a glossy leaflet printed in pretty pinks and purples that included helpful tips like having some chocolate and running myself a lovely hot bath.
So for the next four years, that’s what I did, all the while believing that if the doctor said this is normal that must be the case, it must be totally fine for me to experience joint pain and muscle pain so severe that I have to unpeel myself from my bed or a chair joint by aching joint, it must be totally normal to be sensitive to sounds and sensations that it felt the like the world was literally trying to hurt me when the sun shone, to feel overwhelmed and exhausted to not being able to get my words out, to stammer and stutter before eventually resorting to calling the lawnmower the grass hoover as my brain refuses to fire on all cylinders, must just be totally normal.
Unbeknownst to me at the time, this was the first time that I had started to make those crucially important steps of understanding that what I was experiencing might just possibly be linked to my periods.
In July 2018 around the time I was getting married to my husband - of whom descriptive words do no justice, he is a powerhouse, he is my still point in the ever moving world.
I was undertaking a leisurely flick between my social media apps when my eyes stumbled on a post that made every light bulb light up, volcanoes explode, all the plants in the world flower at once. It was a post displaying the symptoms of PMDD in a list, it was a post describing me. Me…in a post…it described the last twenty years of my life.
I took a deep breath and read more. It was uncanny. It was spot on. It was any other way of saying that the shoe fit that you can imagine, even down to the ever present experience for me of losing my words. Anyone else ask their other halves to help them unload the wet helicopter or rely on an ever expanding range of full body movements to try and act out words?
Becoming my own advocate
After this earth moving connection was made in my brain I took myself off sharpish to my doctor. They had not heard of PMDD. But they listened, didn’t dismiss me, but ultimately they didn’t do anything, said they would do some research and get back to me.
Sadly, they didn’t get back to me. I felt disproportionately crushed, it had taken a lot for me to go to my doctor and begin the process of becoming my own health advocate. So until January 2018, I did nothing, I plodded on.
Sadly PMDD symptoms had had a major impact on my ability to enjoy my wedding. I spent much of the party that we held the day after our small ceremony hiding in the staff room of the pub we had hired watching the party happening down below via the CCTV monitor. It meant that for a most of my honeymoon to Paris I was a whirling ball of rage, unable to engage with or appreciate all the wonderful plans my husband had put in place.
I remember stomping along the Seine, head down, not being able to physically look up from watching my feet dragging themselves along, they call Paris the city of love right? For me it currently resides in my brain as the city I was a nightmare on our honeymoon.
This is just one of many example of times when my own personal hell week has impacted on my ability to feel and connect with the joys of life. Feel free to ask me about the time my husband had to drive me over 1500 miles’ home, the entire length of two countries in three days.
In January 2019 I made another appointment and spoke to an advanced nurse practitioner, her opening words were, ‘SO, you’ve got me stumped, what is this PMDD?’ Again my heart sank and I entered the now familiar pattern of spending most of my allotted appointment time explaining what PMDD is.
She said she would do some research about where to refer me to. Sadly, I never heard from her again, starting to sound familiar? I spoke to her about how I understood that SSRI’s can be a part of the treatment pathway, I left with a prescription for Fluoxetine. Fluoxetine and I were not be become happy bedfellows. Within days I was starting hear a big brother style narration accompanying my on my day, ‘Danielle is reaching out her hand to open the door handle, Danielle is opening the door, Danielle is walking through the door’. I tried to ignore it, in other ways my brain felt better, it felt like cool water was flowing through it.
It all went swiftly downhill on the day my dog ate some cat poo. It felt like a switch had been switched in my head, I became a creature of rage, a ball of fire, every single molecule felt enveloped by this hot red heat, I understand now what people mean by the phrase 'seeing red', I saw it.
I was utterly convinced that he had done it on purpose and was out to get me. Now if any of you know me, you will know that I love my dog, I love him unreservedly and whole heartedly, he is a good lad. I remember saying to my husband that I was going to stab the dog, Stevie is his name. This lasted all day, my thoughts were racing faster and faster, I felt unsafe, paranoid, scared and like it is was highly likely that I might experience spontaneous combustion and splatter the bedroom that I had cocooned myself in with gore.
By this point I had worked in mental health services for many years, I knew all about serotonin syndrome and in a brief moment of clarity I realised that that was more than likely what I was experiencing. I stopped taking the SSRI’s that day. Stevie the dog and I remain the utter best of friends, but I will never like it when he eats cat poo.
After a few more weeks, I felt angry again, I felt abandoned, I felt like no one wanted to help me, like I was not important enough to help. My anger spurred me on to call my doctors to complain about the lack of support I felt I was receiving. This is not my normal nature and it was terrifying to me, but, wow am I pleased I did. The person I happened to speak to was a sexual health nurse, who had an interest in woman’s health. She had recently undertaken training on PMDD from a clinical at the Chelsea and Westminster hospital in London.
She booked me in to see her straight away and emailed me over a list of resources that were out there for me to investigate, alongside those incredibly important symptom logs to be used as a diagnostic tool. She referred me to the Chelsea and Westminster gynaecology department and I had my first appointment booked in for June 2019. By this point I was only experiencing 5 or so symptom free days throughout the month, it felt bleak and I was incredibly lonely and I wanted to be dead.
A week or so before this long awaited appointment I received a call to say that it had been cancelled and moved to October of that year. I stood there in stunned silence, feeling like my stomach was making its way out of my vagina.
I literally stamped my foot and said 'NO!. No, I will not wait until October, I cannot wait until October!' ... and low and behold I was offered an appointment for two days later.
Two days later I took myself off up to London, arrived at the hospital in good time for my appointment and then sat in a hot, airless and windowless waiting room for the better part of two hours until I was seen. By this point, all twenty years of frustration and confusion were rumbling away right at my emotional earth’s crust.
I got in that room and I sobbed, I howled, I made noises that I didn’t know I could make, I ate more of my snot than is probably advised as it dribbled non-stop out of my nose and into my open wailing mouth. After about ten minutes of this I got a handle on myself and pulled out the reams of notes I had taken in preparation.
This doctor decided that putting me on hormone replacement therapy for three months would be the first step in my treatment. So off I went clutching my copious notes and began a regime of smearing what I call the smelly gel onto my legs morning and night and popping a nightly dose of progesterone. It didn’t work.
I have to admit that my treatment at Chelsea and Westminster to date has been patchy, more than half of my appointments have been cancelled, in fact as I sit here and type this I have received a text message to tell me that my next appointment has been cancelled, the one before that was cancelled too.
There have been numerous administrative errors that have meant that the amount of time that I have needed to spend on my medical admin had started to impact my working day and general wellbeing.
I went back to Chelsea and Westminster that October, saw a different doctor, started from scratch. She suggested that HRT alone was not for me, it sounded to her like it had confused my already muddled and exhausted body even more.
So began the next stage of my treatment, a GnRH analogue alongside the HRT, a ten weekly injection popped neatly into my proudly ample bottom.
One of the ways that this injection purports to work is by inducing a pharmaceutical menopause and freezing your menstrual cycle, it may be reversible and induced, but it is still the same as a traditional menopause in many ways.
The next morning, I woke up because I was hot, not just a little bit, but HOT, covered in sweat, ah, I thought, so these are the hot flushes that I teased my mother about so meanly when I was a teenager. The menopause had started and it felt like the rug had been pulled from under my feet.
I began to experience panic attacks multiple times a day. I would sit in meetings at work praying that no one would notice that my heart was beating out of my chest, hoping that my fringe would hide my sweaty forehead, and hoping that no one would ask me something so I would have to blurt out that I needed a minute because I couldn’t get enough air into my lungs to think straight let alone contribute anything of value to a meeting.
I became excellent at the strategic nod and head tilt. After three weeks of this I took myself off to the doctors again and asked for some anti-anxiety medication and my new friend citalopram entered my life.
For me, this tiny little white pill was miraculous. I felt like me. I could think. I felt hope for a future. This tiny little white pill coupled with the GnRH analogue/HRT stopping my menstrual cycle for a couple of months turned me into the person I always knew I was but wasn’t able to access as I was always using my energy to battle with endless cycles of symptoms.
Dealing with the menopause was really rough, and it was something that I wasn’t able to talk in detail about with my peers. I was only 33 at the time, it was an alien to concept for them. But for me, the menopause was easier to work with than PMDD.
In January 2020 I went for my second GnRH analogue and had a tweak made to my HRT dosage, in short, it didn’t work. My menstrual came back and I was experiencing a heavy bleed every ten days for the next ten weeks. My PMDD symptoms were relentless during this time, not a single day off from them.
I upped my citalopram. I felt like I was wading through a bog made of treacle every day. I was in pain emotionally and physically. I tried to get appointments at the Chelsea and Westminster, it wasn’t possible, and being realistic I was in no state to travel for a few hours to get to London from where I live.
A few months ago in March 2020, I had my third GnRH analogue, I felt there was value in having another go and reverting to the October dosage of my addback HRT and since then, despite writing this under current covid-19 lock down restrictions I can feel that unfamiliar but blessed feeling of lightness starting to creep in.
I am able to notice the details again, I am able to feel the love that my friends, family, dog and husband have relentlessly shown me. I no longer feel utterly convinced that PMDD will one day be the reason that my life ends earlier than it organically might have.
Thank you for reading this, I know it is long, but that is the sad reality of PMDD for far too many woman, the average time to get a concrete diagnoses is I believe around the 8-12 year mark. So when we tell our stories they will undoubtedly be lengthy as they encompass such vast portions of our lives.
I often wonder whether I would like to be able to go back and change my experience, whether I would take it away, and the answer isn’t simple. Would I like to not be ill, of course, who wants to be chronically and relentlessly ill? But I would not take back a single one of the lessons it has taught me.
I am confident in saying no now, in prioritising myself and my health needs and not feeling guilty about that, I know what I need and like and am utterly unapologetic about that. I don’t always enjoy having to act as my own health advocate but admire myself for how adept I have become at this, for the courage that I have displayed over and over, at the kindness I am able to now apply to myself.
I love the woman I have become, I have learn to love all the many iterations of me that I have been over the years and offer them thanks for getting me to this point. This very pivotal point for me where I finally feel able to share my story, to be able to value my experience and to be able to see that adding my voice to the many other strong woman out there who experience this means that other woman will not have to wait so long for diagnoses, won’t ever need to feel shame or experience medical gas lighting.
I am proud of myself, I am proud of my body for keeping going through the last 23 years of living with PMDD.
Anyway, I am going to sign off now, this wraps up my story for now, and I look forward to see what happens going forward. I am off to stare at my dog, let’s all cross our fingers that today is not a day that he eats that damned cat poo!
[Thank you Danielle for sharing your story]
This blog site is hosted by Dr Lynsay Matthews, Research Fellow and PMDD researcher at the University of Birmingham.
If you'd like to share your story, drop Lynsay an email at drlynsaymatthews@gmail.com
If you'd like to hear about or be involved in Lynsay's research see her research page ⬇
LOOKING FOR MORE INFO ON PMDD?
A reminder that you'll find up to date information and support for PMDD at www.iapmd.org For info on raising awareness visit www.viciouscyclepmdd.com