Nicola's Story

Being a woman and, specifically, having a menstrual cycle is the hardest thing I have to go through. At worst, for two weeks of the month, I want to die. Writing that now, on the good side of the month, this statement means nothing to me; I simply can’t identify with it. It’s entirely like someone else wrote it, someone else felt it; someone else experienced it. That perhaps explains why, in the darkest moments, I want nothing more than to crawl out of my skin, revealing the happy, healthy version of myself. Hormonal changes within my body have rendered me an anxious, depressed person for around 14 days of the month for over three years. That’s approximately 1.5 years of my life. That’s a very hard fact to face up to. 

I have a diary and in that diary I write and circle a small number on each date of the month. That date is the day of my menstrual cycle on which the day falls. – Days 14 to 28 bring increasingly crippling anxiety and depression and, at worst, suicidal thoughts. It can be a huge source of anxiety in realising that a stressful appointment or impending deadline falls on the wrong side of the month. The only thing that gets me through this hormonal psychosis is the impermanence that comes with it - I count the days until my period. When it comes – like clockwork - I am free; free from the aggression and irrational thoughts which have put work, relationships and life on hold. free from the body ache-inducing anxiety and the intense fatigue. I am not ashamed to say I have no control over my actions during this time; it is biology, physiology, hormones and its power over my body and mind is all-consuming. 

Whilst PMDD, a severe form of PMS is not common, I am not alone. According to NAPMDD, ‘8% of women’ suffer and roughly ‘15% of women with PMDD will commit an act of suicide in their lifetime.’ (It's worth bearing in mind that these figures are estimates and vary from source to source.) Which prompts me to ask, why aren’t we talking about it? Why is menstruation still a taboo and ‘period’ a dirty word? Why are we not educating girls otherwise? Why are the health professionals not ensuring that there are safe spaces for women affected by hormonal trauma? For these reasons, women affected are often misdiagnosed as bipolar. ‘If this was a man’s illness, it would have been cured’ is a bitter yet accurate response of many women’s thoughts.

For me, going to the doctors has been an anxious, negative experience. I have never been more aware of my gender than in the GP’s surgery. I can’t quite explain it any other way than this - I became conscious of the need to not sound dramatic; to try to say calm and to state emotionless facts. To someone who has never encountered PMDD, the illness can sound unbelievable. It is very common for blood tests to come back as normal despite the persistent hormonal imbalance. When this happened to me, I felt the need to further prove my illness to the practitioners. I wanted nothing more than for someone to listen and to understand the severity of my illness. To see that I knew my own body and my own mind and to know that it was never all in my head. 

On future visits to the doctor, and as I did my own research, I often felt it was better to keep quiet and leave with a pill packet; one which I was anxious to try. I am almost entirely sure a brief spell on the pill set my hormones off balance. I know I am not alone after speaking to several women who feel the same way. Synthetic hormones can often make the hormonal symptoms worse or bring about new problems; a risk which doctors do not discuss with women before they begin their first pack. Again and again, on the largest Facebook support group in the UK, I see women posting of being given another pill, anxious of the weeks that would follow. Often, months later, the hormonal issues worsen. There’s a reason why women like myself take refuge in online forums and Facebook support groups, and it’s because the NHS doesn’t have a place for PMDD outside of traditional, often detrimental PMS treatments. There are several specialists within the UK. Forging a link with them could be potentially life changing for women with severe hormonal implications. This is just one of many reasons we need to be talking about PMDD and women who suffer debilitating hormone imbalances.

Despite the severity of my symptoms, it has never been suggested to me that I take time off work and I have never felt comfortable to give PMDD as a reason for absence. Although my symptoms are extremely severe, I had the feeling that it wouldn’t cut it. For the same reason I have not applied for any disability allowance. I know I’m not alone. Despite years of suffering, I have been offered no written, formal diagnosis from a health professional and received no help in attempting to go about supplementing/replacing my currently part time wages. At worst, even part time work is a real trial for me. There are no specialist support groups; no guidelines for families or partners affected by PMDD; no plan. Nobody is talking. There is currently no place for PMDD within society, which is why myself and many other women can better identify with those in society affected by mental illness.

PMDD is not going to go away. We need to start talking. I am just one women but this is my plea;

Let’s educate girls about the dangers of synthetic hormones and the potentially life-ruining affects of imbalanced hormones. 

Let’s make doctors’ surgeries safe spaces for women to talk about menstruation and hormonal issues with a care plan in place, including psychological support.

Let’s teach employers protocol on how to support employees whose life is seriously affected by hormones. 

Let’s pressure the government to increase awareness. 

Let’s talk about PMDD when we talk about mental illness. 

Above all, it starts with:

 

Let’s talk about menstruation. - Let’s never make ‘period’ a dirty word.