PMDD, Full Hysterectomy and Hope: My Story
Content note: This article contains personal discussion of suicidal thoughts and mental ill health. Please take care while reading.
It still feels unreal. At the time of writing it’s been seven weeks since surgery and all quiet on the Western Front… well, ok; I suppose northern and southern front in this case.
Save for four, ever-fading scars no longer than an eyelash around my abdomen, you wouldn’t know I had recently had major, life-changing surgery.
But for me, my entire world has changed.
2020
If I were to play a game of word association with the population of the modern world, I expect that, for the vast majority, “2020” would automatically be followed by “Covid.”
For me, 2020 will always be associated with premenstrual dysphoric disorder (PMDD), though at the time I had never even heard of it.
I was lucky to have moved in with my then best friend as lockdown fell on the UK. As surreal and truly petrifying as it was, my life was in a good place. I had a wonderful best friend, a sanctuary, friends, the month before lockdown I had performed in The Vagina Monologues (a long-held dream of mine), I had a job that I was passionate about (supporting other care experienced people across the UK and providing access to the Arts) and a new relationship. Things had been looking up.
In the relative peace of our quiet third floor apartment, gazing out at the serene, tree filled panorama beyond our bay window, I could breathe. Finally, a respite from a lifetime spent in survival mode. I was safe and grateful for it.
PMDD makes itself known
That…that changed.
I recall some moments with complete, exacting clarity. Others, I see through a fisheye lens. The rest of 2020 is mostly lost.
I had struggled with depression and complex post-traumatic stress disorder (CPTSD) since I was fourteen years old. But this felt different. Very different.
At the beginning of the UK lockdown (March 2020), it was only in the week before my period that I would have intense migraines, cramping, mood swings, depression. By September 2020, the symptoms would last for two weeks and were getting more unbearable. The migraines would last for days. The cramps would steal my breath, not releasing for minutes. I couldn’t sleep but was always exhausted.
Dysphoria: putting the “d” in PMDD.
Mentally, I was a shell of a human being. It is still challenging, even five years on, to accurately describe the dysphoric aspect of PMDD. I have tried many times, but words fall short of the experience:
- Your brain is hijacked by an assassin who confidently, loudly, assuredly takes the steering wheel. Their only aim is to destroy you.
- If you’re into science fiction movies, you may have seen scenes where a spaceship is out of control and spinning incredibly fast. The astronauts get disorientated, can’t move, throw up, pass out. Gravity is out of whack. You don’t know which way is up. All you can do is strap in, press the right buttons and ride it out.
- On a less extreme day, dysphoria can be a whispering Iago on your shoulder, creating paranoia, hypervigilance and casting doubt on who you are at your very core.
Dysphoria is by far the most dangerous and terrifying part of PMDD. By April 2021, just over a year since these symptoms started to kick my ass:
- I was experiencing symptoms for up to three weeks of every month. They would stop completely as soon as I had my period. Then start again.
- I quit my job.
- My relationship was over.
- My best friend had become a sort of carer for me, which irreparably changed the dynamic of our friendship.
- I alienated friends.
- I had repeatedly obsessed over ending my life.
- Every medical professional that I had reached out to was dismissive. “It’s the lockdown, everyone is scared and depressed.” “But have you actually self-harmed?” Or my favourite (as a then 32-year-old woman):
“Have you ever heard of PMS/PMT?”
Funnily enough, Mr middled-aged-and-never-had-a-period male doctor, yes. Yes, I have.
Acute PMDD diagnosis
In April 2021, two things happened which changed the course of my life forever.
- I joined a new GP surgery after moving to a new area. Luckily, my new doctor had recently read a new study about PMDD, and she made an urgent referral to a specialist.
- I had my first consultation with my amazing specialist (let’s call him Mr K), the head of Gynaecology at my local women’s hospital.
On the way to that first appointment with Mr K, I remember feeling so empty and disillusioned; I had lost count of how many times I had been in crisis and met with gaslighting. I was exhausted. Hope felt like a childish concept. Not even blasting the Hamilton soundtrack in the car whilst en route had helped and was most likely more of a masking technique I had adopted to make my best friend worry less.
All I remember from that first meeting was feeling, very quickly, that this would be different. Mr K listened to everything I had to say. He didn’t interrupt. He asked relevant and thoughtful questions. He looked at my history and reflected on all of it as the larger picture. He validated all of it. I wasn’t crazy.
Without a doubt, it’s PMDD. Acute PMDD.
I remember crying with relief. I wanted to hug him with gratitude. I get emotional even now thinking about it.
I started treatment that same day.
PMDD treatment: my life in the balance
Because of my history with depression and anxiety, I had already been on various doses of antidepressants for 18 years. I had been in and out of different types of therapy for the same amount of time. I had tried every contraceptive under the sun. And so, all of the first-line treatments for PMDD had already been exhausted. After a lengthy and detailed conversation, I agreed to start a treatment which reflected not only this, but the severity of my symptoms.
For six months I would receive monthly injections of Prostap (Leuprorelin) to bring about a temporary chemically induced menopause. This would send my ovaries to sleep. Because this treatment can affect bone health, it also involved daily prescription-strength vitamin D and regular bone-density scans.
I learned that PMDD was, in layperson’s terms, the brain’s abnormal reaction to normal hormones largely produced by the ovaries, particularly progesterone. With my ovaries asleep, in theory, this would alleviate my symptoms.
After six months, we introduced Hormone replacement therapy (HRT) into the mix. The form and dosage being tweaked over several years to find the “right level of awake” or progesterone that my brain could handle. At one point, I was so sensitive to even the slightest fluctuation that my HRT patch had to be cut first into halves, then into quarters.
I was lucky to find menopause a relief. After the turmoil of acute PMDD, night sweats and hot flushes seemed insignificant and inconvenient at worst. Generally, the treatment gave me back huge portions of my month, and, in those moments of reprieve, I began to allow myself to hope again.
PMDD and “elective” hysterectomy: Choosing life over convention
After a few years, however, the treatment stopped working as well as it had. Although I no longer had periods, I was starting to get more frequent, sudden and dangerous symptoms. In early 2024, following more than one suicide attempt due to PMDD-induced dysphoria, I found myself in the, by then familiar, office of Mr K discussing the only option left to me.
A full hysterectomy had been on the cards since my first consultation; I knew that if the Prostap failed that it would be the last possible way to keep me safe. I’d had years to process the idea of never being a mother at this point. I feel incredibly privileged that, although nuanced, my over-riding response was always positive. I had never had my heart set on becoming a biological mother; a realisation that had only recently become clear to me.
Having spent my teenage years in foster care and other factors, like my Nan taking on the role of both father and mother for me, I had first hand experience of how, if I wanted to, I could be a mother in a non-conventional way.
I also knew, after years of trauma informed therapy, that my creative expression could channel not only my grief, trauma and pain, but also my vast capacity to love.
I did not doubt my potential to mother. I think my loved ones would agree that I have what are commonly seen as maternal characteristics; I am nurturing, fiercely protective, caring, patient. You need only see my relationship to my niece and nephews for proof of this (Aunty Kimmy will always protect the cubs). I love children. I love creating safe, fun and loved-filled environments for others. I would look great in my Lucy & Yak dungarees and a baby bump. It wasn’t a case of thinking that I would be a “bad mother.” I knew I could be if that is what I wanted to do.
In the 12-18 months that passed between being put on the waiting list for a full hysterectomy and having the surgery, I began to feel more comfortable living with hope.
It’s all so quiet: life post full hysterectomy for PMDD
Since having the surgery, I haven’t wanted to “jinx things” by sharing how I feel. But it is time.
Though anaesthetic and fentanyl played a role when I first came round from the procedure, I remember opening my eyes and not believing I was awake. I looked around the room dazed, searching for something; something was different. It took a beat to realise what was missing. The noise. The various beeps and audible flow of oxygen of various machines in the recovery bay reassured me that I hadn’t gone deaf.
I hadn’t realised that even when PMDD had not been “that bad” (by my standards), there must have been a persistent cacophony of negative thoughts in my head for years. Made worse by ADHD and CPTSD; magnified by PMDD. Constant. I must have assumed everyone lived like this. Until it stopped. And, touch wood, it hasn’t returned.
PMDD, hope and a new beginning
Hope has become the friend that I cherish most; she has really come through for me. As I think about how to sign off on this piece, I look around the room.
My furry son, a five-year-old cockapoo called Mr Darcy, snoozes peacefully next to me on the sofa. Framed photographs of my partner and me on holiday (before meeting him, I had convinced myself I would never have another relationship because of PMDD). Get well soon cards from family and friends, including my dear friend Phoebe who founded The PMDD Project; a charity I now work with to improve the lives of other PMDD Warriors in the UK.
At thirty-seven years old, I finally believe that I can live outside of survival mode. My life has now begun.
If anything in this article has affected you, support is available.
In the UK, you can call Samaritans free at any time on 116 123.
If you need urgent help for your mental health, call NHS 111 and select the mental health option.
If you or someone else is in immediate danger, call 999 or go to A&E.
This is a personal experience, treatments affect people differently, always seek advice from a qualified healthcare professional.
