Becci Frost, 36, had such extreme PMS that she once had to be hospitalised for her own safety. She was misdiagnosed for years until finally aged 32, she was found to have PMDD, a severe form of PMS, and given the right treatment. She lives in Bridgend, Wales, with her husband and three children, aged five, 16 and 22.
Right from my first period at 14, my mum noticed something wasn’t right. I’d be suicidal in the run-up, but I’d been told that PMS was a rite of passage, part of ‘womanhood’. The problem was, we were told it was ok to feel teary and bloated, but the depths of despair that I felt were clearly not normal.
I explain PMDD like this: my hormones and my brain are at war with each other, and my body is the battleground. Those with PMDD can’t tolerate the fluctuations in oestrogen and progesterone and so their brain over-reacts.
PMDD is not just feeling moody or low. Everything is black. The joy is sucked from life. You teeter on the edge each month, of wanting to live and wanting to die, and you don’t know which way you’re going to fall.
Then there’s the rage. It’s like this red mist descends and you are powerless to stop it, and anything that happens during those times, I have no recollection of. It’s like this entity has taken over my body and I am me, but I am also not me. It’s terrifying.
I have vivid memories of chasing my brother round the house with a hairbrush when I was about 14. My brother was shouting, “Help me!” as my best friend looked on in horror. Afterwards, I asked her, “Don’t you feel like this before your period?” The look she gave me told me, no, this is not normal.
Disrupting my life
One by one, my friends started to drop off and my home life was horrific. My brother and sister were scared of me and there was one point, after I threw a brick through the window, that my mum said, “You are going to have to leave until you get your period.”
Even as an adult, married with kids, I’ve run away to my mum’s on occasions. It’s the only way I know to get away from myself.
I felt desperate to escape myself. My way of doing that was to run away and sleep on the local beach. Even as an adult, married with kids, I’ve run away to my mum’s on occasions. It’s the only way I know to get away from myself.
Concerned, my mum took me back and forth to the doctor, but we were told “Every woman gets PMS” and that I must just be exaggerating.
I was referred for counselling and my symptoms were put down to me being a troubled teen from a broken home. My parents split when I was nine, but actually got back together when I was 18.
Reaching rock bottom
Then I was diagnosed with depression, anxiety disorder, PTSD, emotionally unstable personality disorder and bipolar disorder. They were medicating me with antipsychotics and mood stabilisers, but it was having no effect.
All the time, my mum was saying, “No, it’s not right, there’s a clear link to her cycle,” but nobody listened.
Then when I was 20, I fell pregnant with my son and the symptoms vanished, but I didn’t put two and two together.
Over the years I’ve made numerous suicide attempts, and in 2012, I was hospitalised after an overdose. At that point, I was referred to the mental health team, but then I got my period and was like, ‘Oh, I’m back to normal now.’ The doctors saw that in me and I was discharged, but nobody made the hormone link.
My husband has been phenomenally supportive, but it was awful because we didn’t know why I was this horrible person for two weeks of the month.
In 2017, when my son was nine, I met my husband. Our relationship has been very impacted by my PMDD. There were times when I hated him and wanted to leave. I’d pick fights and say awful things like, “I wish you’d die.” He’s been phenomenally supportive, but it was awful because we didn’t know why I was this horrible person for two weeks of the month.
In 2018, we had our daughter and again, the symptoms vanished during pregnancy, but I was still being misdiagnosed.
The following year, I was at breaking point. I said to my husband, “I don’t want to see next month, I can’t do this anymore” and so he came with me to the GP for an emergency appointment.
The right diagnosis
Thankfully, the doctor we saw that day was clued up about women’s health. She asked my husband to see if he was noticing these cyclical changes.
Then she said to me, “Has there been any point in your life when you haven’t had these symptoms?” And I said, “Yeah, when I’m pregnant” and it was like a jigsaw puzzle fitting together. She said, “You haven’t got any of these other conditions – you’ve got PMDD.”
When she explained it as a severe form of PMS, I was quite dismissive. But then I came home, googled PMDD and it was like, “Oh my gosh that’s me.”
The trouble was, I’d spent 18 years being misdiagnosed so I had a hard time believing that finally, this diagnosis was right.
Still, my psychiatrist confirmed that yes, it was PMDD and I was discharged and sent to the Gynaecology department.
Balancing hormones
Every PMDD patient’s treatment is different, but the next step for me was getting the Mirena coil, which gives you a steady stream of synthetic progesterone, along with oestrogen patches to trial.
For some PMDD sufferers, using progesterone and oestrogen together like this prevents the hormone fluctuations that cause the symptoms. But for me, the Mirena coil caused a severity in mental symptoms, because I basically had too much progesterone.
So, for 18 months now, I’ve had another treatment known as ‘chemical menopause’. Every three months I have an injection called Prostap – this acts on the pituitary gland in the brain to stop ovulation and therefore stops any estrogen or progesterone being released naturally.
Even though I had a negative reaction to the coil, I have to keep it in, as I need some progesterone to protect my womb from endometriosis. I get my replacement estrogen via a gel I rub into my skin (so it’s effectively HRT).
The fact I am now getting a managed, steady flow of hormones, rather than the dips and spikes I had with my own natural cycle, means my PMDD symptoms have vastly improved.
The fact I am now getting a managed, steady flow of hormones, rather than the dips and spikes I had with my own natural cycle, means my PMDD symptoms have vastly improved.
However, I’ve had mixed feelings going down the chemical menopause route. On one hand, it’s good because I am not ready to go for the hysterectomy, and I know the injections are reversible, so if I want to go back to having periods, I can. (Not that I want any more children.)
Life beyond PMDD
However, despite the positives, I have still struggled mentally with the transition. My PMDD had been the one constant in my life for so long and then when it disappeared overnight at first I felt like, ‘Who am I?’
A whole new world has opened up to me and I’m still adjusting – simple things like going out by myself were impossible before during those two weeks, because I was so unstable.
Now if I’m having a down day, I can ask someone to talk to me, whereas before even the sound of people’s voices would be unbearable.
A whole new world has opened up to me and I’m still adjusting – simple things like going out by myself were impossible before during those two weeks, because I was so unstable.
I know I’ll have to have a hysterectomy at some point. The NHS guidelines are to only be on this injection for six months before it becomes ineffective, but I’ve been on it for 18 months and I’m functioning well, so we’ll cross that bridge when we come to it.
I like the feeling of now, when I’m angry, knowing I’ve a reason to be angry instead of it just being a symptom of my PMDD. I can see, ‘Ok, that person has annoyed me and I am angry with them, but I’m not angry at everyone!’
What’s helped me won’t be right for everyone but my advice is that if you feel like you are struggling with extreme PMT, track your symptoms alongside your menstrual cycle. If you suspect you have PMDD, go to the GP armed with as much info as possible and take someone who knows you well to advocate. Medical professionals don’t always get enough training on PMDD. It’s also important to reach out to other people with PMDD for support too because they are the experts.
For support with PMDD, visit The International Association For Premenstrual Disorders (IAPMD). If you are feeling suicidal, remember you are not alone. You can contact The Samaritans any time, day or night on 116 123. You can also email the charity on jo@samaritans.org.
‘PMDD gave me hypersomnia – I was sleeping for 18 hours a day’
Laura Murphy, 45, from Kent, was diagnosed with PMDD in 2015, aged 34. She started an awareness project called Vicious Cycle in 2017 and now works for the charity IAPMD. Here she shares her experience and explains the different treatment options…
PMDD is a hormone-based mood disorder that affects one in 20 women of reproductive age and those assigned female at birth. It is not about hormone imbalance, it’s about hormone sensitivity. The brain has a very negative reaction to fluctuations in hormones in those two weeks before your period.
This is why people can be affected at any time in their reproductive timeline. PMDD can start with their very first period, or not until peri-menopause. Some people don’t find they have symptoms until they have children, after they have a miscarriage, or begin HRT.
Basically, as soon as there are changes in the hormones, or hormones are being manipulated (with HRT or hormone-based contraception, for example) symptoms can ramp up.
Recognising PMDD
My PMDD kicked off at 17 when I took oral contraceptives for 21 days and then switched to sugar pills on day 21. I couldn’t tolerate that big drop in hormones.
PMDD symptoms include depression, anxiety and for some people panic attacks. Changes in sleep habits are also common. For me it was hypersomnia, so I had to sleep 18 hours a day. I couldn’t keep my eyes open.
With PMDD, I’d decide that I didn’t love my partner and I’d be better living in my car and that felt very reasonable at the time.
It’s important to recognise that the difference between PMS and PMDD is not clearly categorised – it’s about the severity of symptoms. Someone with PMS might feel weepy whereas I would feel like I’d had a bereavement. Equally, someone would feel irritable with PMS, but with PMDD, I’d decide that I didn’t love my partner and I’d be better off living in my car and that felt very reasonable at the time. The dysphoria (low mood) is real.
Treatment options
Managing PMDD is very much about trial and error and also individual-centred – what works for one person won’t work for another. Some people may find hormonal contraceptives manage their PMDD (like the Mirena coil that Becci had), whereas others might just want extra support in those two weeks before their period and no medication at all.
I got diagnosed in 2015 when I was 34 and tried hormone therapy (so, the Mirena coil plus estrogen like Becci had) to try and suppress the cycle at first, and then chemical menopause (the Prostap injection) but none worked well for me.
A full hysterectomy like I had is only for severe cases and plenty of people find other treatment options work well.
Having a hysterectomy and full ovary removal three years post-diagnosis, felt like my only option, but I’d hate people to think they’re going to need a hysterectomy when they’re very likely not. Hysterectomy is for severe cases and plenty of people find other treatment options work well.
In terms of the future of PMDD, early intervention and diagnosis saves lives, so the main thing for me is training for GPs, who are the gatekeepers. They need to be telling people to track their symptoms with their cycle to see those patterns.
There also needs to be more joined up care. At the moment, people with PMDD go to gynaecologists but gynaes aren’t necessarily trained to deal with people who are suicidal. Also, mental health professionals aren’t always trained to see the vital link between hormones and deteriorating mental health. Therefore, we need more training about PMDD among all health professionals, across the board. PMDD needs to become a permanent part of the reproductive health conversation, just like the menopause has become in recent years.
