Nic, April 25, 2018

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What is premenstrual dysphoric disorder?

Here is what it isn't.

It isn't 'feeling a bit blue' each month. 

It isn't 'just cramps and stuff'. 

It isn't 'getting a bit ratty'. 

It isn't something we 'need to try a little harder' to overcome. 

We've all had things like that said to us. Maybe from friends, or family, or professionals. 

Premenstrual dysphoric disorder (PMDD) is estimated to affect 3-8% of women. It is a disorder of the endocrine system that causes serious mental health problems.

We can feel severely depressed. We can be agonisingly anxious. We can feel uncontrollable rage. We can feel so exhausted that we crawl up the stairs at night. We can get intensely paranoid. We can experience misophonia, hallucinations, psychosis. We crawl to our periods, find (hopefully) some relief, only to have the whole array of symptoms start up again.

Many women are not heard, not listened to. Many women are misinformed. I think the stigma surrounding PMDD is down to people having no understanding of the condition. Many people with PMDD are trying to reach out, get support, find answers. When people are referred to psychiatric teams, they are often misdiagnosed with conditions like borderline personality disorder (BPD) or bipolar disorder. I was misdiagnosed with BPD.

I also think we still bristle a little when we discuss periods. Half the planet have them and we still don't feel comfortable talking about them. Add to that the stigma that sadly still exists when it comes to being open about mental health, and some feel this is all the more reason to stay quiet.

I refuse to stay quiet any more.

My symptoms start from about day 4 or 5 of my cycle. The build up to ovulation was the worse aspect in my case. Rage came from nowhere, paranoia was extreme, I couldn't cope with certain sounds. Ovulation happened, and then a steady descent into the worst depression, anxiety, fatigue, suicidal thinking, up until I finally bled and all was beautiful in the world for a few days.

I did this for 28 years.

I isolated myself as much as I could. I couldn't trust how I might be each day. I couldn't talk to people. I became so unbearably anxious that people didn't understand all that was going on, it was easier to become a recluse.

And people walk away. People let you down. People just don't get it. That isn't living. That is a cruel and constant battle to survive. And I, like many others out there, had this condition sitting alongside other mental illnesses and fibromyalgia. An overwhelming cocktail.

I don't know how I've made it to 40, but last year I did. Earlier this year I made the decision to have a hysterectomy. A radical choice to have to make, and yet one that many of us are having to make.

Why have so many people never heard of PMDD? Why have so many GPs never heard of it? This illness is dangerous without treatment. This illness kills women who decide they can fight no more. 

I set up a support group on Facebook to help women who juggle with PMDD alongside other mental health conditions. We've just hit over 1000 members in only a few months, both delighting me that there is somewhere for people to come to, and saddening that I hear so many lost and desperate souls every single day.

I am so blessed to get to know every one of them. Brave, beautiful, compassionate, caring warriors, full of light, creativity, love, and hope. PMDD takes so much, but has given me these people, for which I am truly thankful. 

Once the stitches have healed and the HRT has settled, I hope to continue to devote a lot of time to the folk who struggle. So many of us have kept quiet. There are many silent screams floating around somewhere. It's time that changed.

More information about Premenstrual dysphoric disorder (PMDD) from Mind > 

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