'The rage has always been my worst symptom, I've had it for as long as I can remember,' says Emily-Jane Yates. 'It is massively explosive. One minute I would be fine then the next I'd just be screaming at everybody.
'I'd feel violent and my hands would curl into fists. I've never crossed the line into hurting anybody but I had to control myself, which would be so frustrating. I would re-direct the aggression towards myself by hitting myself and pulling my hair out, even in the middle of the street. There was a voice in my head telling me I looked crazy and to stop but I couldn't. I had no control over what I was actually doing.'
Emily, 25, has experienced these bouts of overwhelming rage since the age of 13, when she started her period. It kicks in on the day she ovulates, about two weeks before she's due on, and lasts until she gets her period.
'The day I ovulate, you can pretty much guarantee I'll get bad moods. I get a feeling in my chest of anger that doesn't go away for the next two weeks. Then as soon as I bleed everything is fine, it washes away and I'm fine for two weeks.'
What is PMDD?
Emily has PMDD, pre-menstrual dysphoric disorder, a form of severe PMS, which includes symptoms like depression, extreme anger, anxiety, panic attacks, decreased interest in their usual activities or relationships, low self-esteem and suicidal thoughts. Then there are the physical symptoms which range from bloating, breast tenderness, extreme fatigue, joint pain and headaches or migraines.
Many women experience PMS (pre-menstrual syndrome) to some degree. It can vary from weeping to a film you normally wouldn't cry at, to snapping at your partner more than usual. It can also take an extreme life-affecting form like PMDD.
Dr Nick Panay, a consultant gynaecologist and the chairman of the national association for premenstrual syndrome (NAPS), told ELLE UK that PMDD is one form of severe PMS, and one that is categorised in the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders (DSM-V).
A groundbreaking study, published at the beginning of the year, by the National Institute of Health found evidence to suggest the condition is genetic.
'The recent finding of a PMDD gene confirms the hypothesis that we have put forward for many years that PMS/PMDD occurs not because of hormonal abnormalities per se, but because some women suffer depression (and other symptoms) due to genetic vulnerability to the changes in hormone levels which occur in every woman,' Dr Panay says.
'There is now concrete proof that severe PMS / PMDD is a genuine disease with an organic basis which will hopefully convince those who viewed it a just a convenient excuse.'
To the outside eye, this seems baffling. How can a natural process, that half the people on the planet usually experience at some time in their lives, cause so much psychological and physical pain?
Being 'a completely different person' depending on her cycle
For Emily, it has obstructed her life for 12 years, even resulting in her losing her 'dream job' and only being able to work part-time due to the acute migraines and intense fatigue she gets which make driving to work incredibly dangerous. On one occasion, during a bout of PMDD, she actually fell asleep at some traffic lights.
Along with the rage, she experienced paranoia: 'It was never about anything specific, I just had a feeling that people were going to attack me. I'd be scared of people on the street.'
She made plans to take her life twice, because of the suicidal thoughts that plagued her mind during those two weeks.
'For that week leading up to my period, it just doesn't seem like it's worth living my life any more, knowing that I will see an end to it, but next month it will be the same. I've only been actively suicidal once or twice, where I actually had a plan, but it's more a case of walking around saying to myself that 'I want to die'. I thought that would solve all my problems.'
Contrastingly, in the time frame between the first day of Emily's period until she begins ovulating, she is a 'completely different person'.
'I'm quite outgoing and chatty, more affectionate and loving with my boyfriend, proactive with taking the dogs out. My whole body lifts and I feel lighter. I feel more spiritual and I look after myself. I eat, drink and care for myself better and treat people better. Everything is so much more positive.
'I rarely have a bad mood within those two weeks. The world could throw anything at me and I could tackle it, I'm superwoman in those two weeks. Then ovulation day comes and my whole body just goes heavy.'
A missed diagnosis
Emily's PMDD story has a common trajectory found among those with the condition (this number is estimated to range from 2 - 8% of women). As a teenager, her mother took her to the doctor because of her 'moods', and she was recommended primrose oil to help with the PMS, which helped 'a little bit'.
Then, at 17, she returned to the doctor and was diagnosed with depression. She was prescribed anti-depressants, which helped to subdue the symptoms, but the fact that it was a physical condition with cyclical recurrences of symptoms wasn't picked up by medical professionals.
It was Emily's boyfriend who first noticed the link between the way her body and mind changes and her menstrual cycle, after living with her and noticing a pattern.
'After one meltdown, I said to him, 'I don't know why this keeps happening,' and he just said: 'Well, it seems to happen every month babe.''
Along with her partner, the two began to keep a symptom diary and Emily looked into PMDD. Armed with research, she headed to her GP, who had never heard of the condition but, luckily, was more than willing to listen to her. She was prescribed anti-depressants to ease the psychological symptoms and began a course of cognitive behavioural therapy which has helped control the suicidal thoughts, rage, anxiety and depression.
The fact that both Emily's doctor and therapist had never heard of PMDD shows how little known and understood the condition is. Yet as her story demonstrates, not batting it away as 'women's problems' and listening to the patient is key to helping sufferers.
A lack of awareness
Laura Murphy, also a PMDD patient and co-founder of Vicious Cycles, says 66% of PMDD patients self-diagnosed themselves through Google. The onus should not be on the patient to receive help for such a debilitating illness that affects their life in such a large capacity. Dr Panay says the reason for this is partly due to the lack in funding and education for both professionals and the public when it comes to this area.
This lack of education is why so many women with the condition get misdiagnosed, often with bipolar disorder, generalised anxiety or depression or just not diagnosed at all. The role of the menstrual cycle is imperative to a diagnosis as there are a range of targeted treatment methods for PMDD including hormone therapy, contraceptive methods like the pill, patch or coil and GnRH treatment - synthetic hormones which bring on a temporary menopause by reducing oestrogen production. All of these methods, which are different depending on the woman and her experience, have the aim of suppressing the hormone fluctuations which trigger symptoms and create a 'constant hormonal environment', according to Dr Panay.
It is the lack of awareness around the issue which spurred Laura, who eight weeks ago had a total hysterectomy to treat her PMDD, to start Vicious Cycles - a PMDD support group for women affected. She did this after running the UK PMDD support group on Facebook, a private group for UK sufferers, which currently has 1,700 members.
'I was adding all the new women to the group and chatting to them and it soon became really apparent that the same story was coming through: That women had been to the doctor and been dismissed,' she says. 'Or, like me, women were going for years and years through hell and then finally stumbled across PMDD by chance and had a 'lightbulb moment'. Women are left depressed, with their lives in tatters, just holding on to partners and jobs, yet are brushed off time and time again.'
The continuing stigma of periods
Both Laura and Emily believe the perpetual misunderstanding and misdiagnosis of PMDD has something to do with the pervading taboos around periods, mental health and women's health.
'PMDD sits firmly in the middle of periods, mental health and women's health,' Laura explains. 'Only this week it was in the press that PMS 'doesn't exist', adding fuel to the fire that women are just 'being hysterical' when it comes to the health. We are not trusted to know our own minds and bodies.'
Both women also think that the complications which can arise from menstruation and women's health, such as PMDD, PMS, polycystic ovary syndrome and endometriosis, should be taught in schools so teenagers can pick up on any symptoms which are feeling out of the ordinary for them.
Since being diagnosed, life has drastically improved for Emily.
'I have had to be more in tune with my menstrual cycle. Treatment led me down a path of spirituality I wasn't expecting. I've always been an advocate for breaking the taboos of menstruation and I feel a lot more positive about my own menstrual cycle now.
'I know periods are an inconvenience for a lot of women, but I look forward to my period now. It's always a good thing for me.'
For confidential support and advice, you can also contact the Samaritans for free, 24 hours a day, on 116 123.
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