My Story

I have a condition called Premenstrual dysphoric disorder (PMDD). This is a condition that affects one in 20 women in the UK.

I was asked recently; why share your story, why open up about your life?

My answer…. why not? If I don’t have the conversations, talk openly about how I feel and how it has affected me, my daily struggles, then who will?

There have been many women that have shared their story, but is anyone listening?

In the press there are lots of conversations being had about suicide prevention, mental health, but I don’t see people having conversations about premenstrual dysphoric disorder (PMDD) after all its estimated it affects 2-10% of women of reproductive age.

What is PMDD I hear you ask? There are some great websites such as Gia Allemand Foundation, offering great advice, The Mind website also has a PDF download on PMDD. But I will give you the quick Low down.

While PMDD is directly connected to a woman’s menstrual cycle, it is not a hormone disorder. It is a suspected genetic disorder with symptoms often worsening over time and following reproductive events including menarche, ovulation, pregnancy, birth, miscarriage, and menopause.

It turns out; PMDD sufferers have an anomaly in their gene activity that triggers more sensitivity to oestrogen and progesterone, which leads to more intense pre-menstrual symptoms.

My symptoms are so severe it stops me having a normal life. Some of the Symptoms can be;

• Feelings of sadness or despair or even thoughts of suicide

• Feelings of tension or anxiety

• Panic attacks, mood swings, or frequent crying

• Lasting irritability or anger that affects other people

• Lack of interest in daily activities and relationships

• Trouble thinking or focusing

• Tiredness or low-energy

• Food cravings or binge eating

• Trouble sleeping

• Feeling out of control

• Physical symptoms, such as bloating, breast tenderness, headaches, and joint or muscle pain

What people without this condition don’t understand, it’s not just about my periods! It is so much more - I wish it was PMS and 'aunt Flow', out-staying her welcome! This condition affects so much of my daily life and it hurts me that I can’t be ‘normal’ or even begins to feel somewhat ‘normal’.

Me and my dad at happier times.

It’s also worse when you’re a child, you go through life feeling what you know is normal, then one day when your body changes and you first start your journey into womanhood, you get robbed. You're robbed of an experience because you are suddenly hit with so many emotions: Intense anger for no reason, depression and extreme anxiety, insomnia and vivid dreams.

You don’t know why it is happening to you and not to other people? It doesn’t go away, it makes you worse and you just learn to cope! You feel that you have stepped into the pages of Jekyll and Hyde, that you are now living this life.

You become two people: The normal you that pops up for only one week of a month, this person then hides away in the dark shadowy depths and the other one - that hormonal bitch that you wished would go away, the one you can’t control, the one who destroys your life, makes everyone believe you are this horrible person. You become upset and angry and you don’t understand why all this has happened to you.

When I turned 14, all this happened to me; I had no one to talk to about this, no one to reassure me this was a condition that affects many women. I was all alone.

I spent most of my periods in the school nurse's office, crying in pain from the severe cramps and feeling like a freak. I remember I used to be at home, curled up on my bed, praying for God to end my suffering because the pain was unbearable.

Me and my mum

I used to pour my heart out to my mum, saying I hated who I was becoming, but she didn’t understand this condition or know anything about this.

My brother and sister were afraid of me; they never knew when I would lose my temper and have an episode. My mum and dad would often leave me behind because they weren’t sure what they would come home to. I was violent sometimes towards my sister for no reason.

me with my sister Millie and my brother Jamie

I loathed who I was for three weeks of the month. I went to the doctor's crying for help and my mum came along for support. I was told it was just behavioural and that I would grow out of it! My experience with this condition is that GPs aren’t the best people; they don’t have an awareness of this condition or how to diagnose or support.

My schooling became affected, I found it hard to concentrate in class, and I withdrew and did everything I could, not to be in school! My mum and dad never gave up on my education: They made sure I had tutors to help me, so I could achieve grades and have an education.

It all became too much for my mum and dad. When I was 16, I was thrown out of my home, I was too dangerous and my moods to unpredictable. I became homeless, I moved in with friends, sofa surfing until a year later and then I moved back home.

I made a few attempts on my life, I self-harmed and I couldn’t stand the weight I would pile on, so I developed an eating disorder.

My family and my friends helped me through a lot of this over the years. I never truly spoke about what was going on. How could I say, 'for one week I feel and am normal, and then for three weeks I feel that I really can’t function and have no control over my moods!' I’m at my worst a week before and after my period. I just sounded crazy and like I was picking and choosing when I was going to be unwell!

For years I went backwards and forwards to my doctor asking for help, I was given all the Wrong diagnoses, depression etc. No medication was effective and I gave up hope with medical professionals.

I met my lovely husband Sam

I wasn’t interested in dating anyone, I had dated a few wrong men and I had a lot of heartbreak. I felt I was always going to be left on the shelf because no one would ever want to marry me! Then Sam walked into my life, I was guarded and built walls but he helped knock them down. We have been on and off in our relationship for many years, initially because we were young and through my episodes.

Love has no barriers, I love you to the moon and back.

I’m very lucky as most women I meet who have PMDD have failed relationships, the guys they meet don’t understand or they get hurt badly and don’t let anyone in.

Sam is very patient with me; he’s so laid back he would be horizontal!

Sam and me in good times

Our relationship and marriage is not perfect, we do have our problems and have had many struggles - our relationship has been pushed a lot to the brink because of me.

Sam has always known it wasn’t me that was getting angry, he has also spoke that he feels that there are two people in our relationship: He loves me but hates the other one. He has told me he struggles daily and feels that he is always walking on egg-shells, afraid that whatever he says can trigger me! It’s awful to know that the one you love is in constant worry of what you might say or do!

Over the years, I have had to find ways of trying to cope with myself, usually throwing myself into my work and my hobbies. I love crafting and needed a creative outlet, so I created the Bristol Crafter and enjoyed making things out of junk. Having a distraction has helped but I need more help, Sam dreads what things I will come home with, what projects I have lined up!

Having a baby with PMDD

It’s horrible to feel that the people that are closest to you are the ones that are the worst affected. This was most tested when I had my first child Austin. For so many years I put off having children, mainly fear of birth and fear of who I would become.

I was once told by someone once, that labour is like your worst period pain, times that by ten. Well panic set in, if my pains were anything to go by, no thank you to having a baby. Sam also spoke to me about feeling scared of what I might have been like pregnant as some women can become hormonal and difficult. He already had that on a daily basis, he was worried it might be worse!

Finding out I was going to be a mummy was one of the best days of my life. I never thought the time would come.

The craziest thing happened though when I was pregnant. For the first time in 15 years, I felt normal throughout my pregnancy and for the first six months after having my son. Sam told everyone we meet, even our midwife, health visitor: 'she hasn’t been crazy, she has been so normal!'.

The feeling of being ‘normal’ and becoming the best person I have ever been in a really long time, all started to slip away when I stopped breast-feeding and my periods came back. Trouble really came knocking and I started to spiral out of control, I felt like I was falling and nothing was stopping me from falling.

My world, Austin was the best gift life could give me.

My periods didn’t come back like before I had children! No, they came back like when I was 14. The depression, feeling so hopeless and manic was scary. Having these feelings and becoming unwell was worse. When you are a first time mum and you want to protect your child, but how do you protect them from you? Especially when you are their mum?

There are no baby books that can explain me, my baby and my hormones. There was no help. Feeling all alone and that no one that understands, was one of my darkest times! It scared me because all I could think about was protecting Austin, I felt judged because no one understood!

Everything thing I do, I do it all for you Austin.

When I sought help, the GP tried labelling me with postnatal depression. The health visitor was advising me I was depressed. I wanted to pull my hair out and scream. I didn't feel depressed about being a mother, and I also didn’t feel that I felt nothing towards my son! I felt everything towards my son, I felt so much love for him, he is my world. The love I had for my Austin, I knew there was no way I was depressed, I had so much love for Austin and the connection I had. It broke me to think otherwise.

I did question myself as a mother and I began to crumble very rapidly. Not being listened to, or people not having the answers because of lack of awareness, is the most detrimental thing when you have PMDD.

The day I realised what was wrong with me

I planned to leave his world, I felt that Austin’s life would be better without me in it! I felt that he would be protected from me if I ended it all. I was in a very dark place and I began to put my affairs in order, ready.

Our first moments together

My anger became so much, it resulted in some awful and explosive episodes of aggression and frustration. Sam left, he took Austin and spoke openly about his fears of Austin being left alone with me! my darkest day! For some reason I felt I needed answers and I turned to the internet, I found an article about PMDD.

The more I read, the more I saw videos of women talking about it, I could see myself in these poor women. It was me, it was how I felt! The only people who listened to me, was Sam, my mum and an extremely supportive manager at work. Through their support I went about getting help.

I went back to my doctors, but they dismissed what I was saying and said it was mental health and I was depressed! In the end I paid privately. I saw a wonderful consultant - she knew instantly that it was PMDD and got me on Evorel patches, twice a week. She suggested that I tried the chemical Mirena coil, and I began to look into changing my diet, no more carbs and sugar. This is very hard when my favourite foods are anything carb based: my go-to fix used to be spaghetti bolognese sandwiches. I love sweet things: sugar, sugar, sugar!

My condition isnt physical, I dont have scars on the outside. All I have is marks from previous patches and my patch to show for PMDD.

My blood results confirmed everything and I had a formal diagnosis. I can’t tell you how amazing that felt to have a diagnosis, to know that it isn’t you, it’s an actual condition. I’m still ongoing in my battle with PMDD. In the past I’ve tried antidepressants, I’ve had CBT therapy. PMDD hasn’t fully gone away for me, I just manage it better. I long for the day that I am PMDD free. The patches are the closest thing to feeling normal but I know that a hysterectomy is my final option.

I want more children, I know that when I stop my patches and come off the coil I have a small window to try, otherwise I will become very unwell! This scares me, I worry, I know I am blessed to have my son, I also know that I can’t afford again to get unwell, but I long for more children. I feel this condition has taken away so many of my Human Rights, of my rights as a woman, a mother etc.

Smile!! His smile can light up any room

There are days still when I feel so low in myself, that I spend time lying in my bed with the duvet over my head, asking Austin to give mummy 5 more minutes! I will get up for work, survive the day, then come home and just go back to bed. There are also times when I can’t move. My muscles and my body aches, times I feel that there is pains and weights that are pulling me down. I’ have times when I’m so buzzing with energy that I can feel manic, I’m like a bull in a china shop! If I have an idea, I’m so focused to achieving that goal.

The insomnia is unbearable, at times and when I do sleep my dreams are so crazy, that sometimes I think I should write them and sell my script! even Stephen Spielberg would pay millions to make a movie of them!

The pain from my periods in the past can be so bad, that I’ve ended up in ICU on a morphine drip twice, escorted off in an ambulance once before, because I’ve passed out from pain.

There is no known cure: there isn’t an option to have a hysterectomy at a young age, it upsets me that this condition affects MILLIONS of women worldwide, but research into this condition is so far behind that of any other disorders. There is also so little awareness of the condition, I’m amazed how many people constantly ask me about it and say “I’ve never heard of this until you mentioned it”.

This surprises me that most people haven't heard of PMDD after all millions of women out there suffer. I ask myself; is it because women are the ones that are suffering it’s not known? Is it because people thinks it’s just hormones and us women are being irrational? I can tell you PMDD is so much more then hormones, this condition affects every part of my life, it also affects everyone in my life!

My Family, my world.

I am not PMDD, I am just me, a woman who is a kick ass mum, that is battling my hormones to help others. My blog is about my world, my battles, struggles, highs, campaigns. I hope that my stories can help others, raise awareness and stop the stigmas.

Please don’t suffer in silence.The Gia Allemand Foundation has lots of advice and support. There is lots of great support groups on Facebook such as; The vicious cycle: making PMDD visible.

Suicide prevention, Samaritans Tel. 116 123