Everyday, there are women and Assigned Female At Birth (AFAB) living with the debilitating symptoms of Premenstrual Dysphoric Disorder (PMDD) going undiagnosed for years by healthcare professionals and not in receipt of Department of Work and Pensions (DWP) benefits. There are an estimated 1 in 20 women living with PMDD.

Myself and my daughter Holly, are both diagnosed with PMDD and our personal struggle has led us to campaign. The lack of awareness and understanding of PMDD is staggering when half the population are women. 

The symptoms we experience include extreme mood swings, chronic fatigue, depression, sensitivity to rejection, suicidal thoughts and many more. These symptoms have had a destructive effect on family, relationships and work for most of our adult lives.

After years of misdiagnosis and watching helplessly as Holly's life fell to pieces every month, I desperately searched the internet for answers. Bingo! I discovered PMDD; this was us! This was our light bulb moment!

Although my medical history spells it out in black and white, PMDD was never mentioned by any healthcare professional over the decades I had been going back and forth to get help. I now hear this same experience from women and AFAB everyday.

Being told repeatedly that there was nothing wrong with me, or not even being heard and fobbed off, has had a detrimental effect on my mental and emotional well being. My life could have been so different if someone had listened to me and a PMDD diagnosis made, when my symptoms started when i was just a teenager. Holly especially has thought about taking her own life, imagine feeling like this 7-14 days of each month and when it passes, waiting for it to come round again. This is no way for any young person to be living.

We should not be having our own light bulb moments.This is the responsibility of the numerous healthcare professionals women and AFAB go to with their symptoms!

Also, earlier diagnosis would have explained the endless list of horrific menopause symptoms that I began to experience in my 40's. It is common that PMDD exacerbates menopause symptoms.

PMDD has deemed myself and Holly unemployable as the symptoms are so debilitating, it is almost impossible to work as a full time or permanent employee. We both work self employed to enable us to work around our symptoms, and manage our own well-being as most employers have no awareness or understanding of PMDD. 

 Another important area of struggle with PMDD is the application process for benefits e.g. Personal Independence Payment (PIP).

We found the benefits applications for those diagnosed with PMDD near impossible to navigate, with the lack of awareness around it at the GP surgery and benefits departments.

Two and a half years ago my daughter Holly was finally diagnosed with PMDD at the age of 29. Six months later I was diagnosed with PMDD at the age of 54.I also have a 14 year old daughter who is already showing symptoms of PMDD. I have suffered life changing symptoms for over 34 years and Holly, for over 10.  This is unacceptable!

We aim to change this by getting GPs mandatory training in PMDD and by making the benefits system more accessible for women and AFAB diagnosed with PMDD.

Support by signing the Premenstrual Dysphoric Disorder Represented petition today. Help us take these issues to the people in government who can make changes! #pmddrepresented

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