I was desperate to be a mother but PMDD forced me to have a hysterectomy at 30

I was desperate to be a mother but PMDD forced me to have a hysterectomy at 30

Alice Girling, 33, Bournemouth, is an educator for the NHS and director of PMDD & Me. She suffered with undiagnosed premenstrual dysphoric disorder (PMDD) for years until a doctor finally recognised the severe symptoms and induced a chemical menopause to treat them. When that didn’t work and she was still desperately suffering, Alice had her entire reproductive system removed. Here, she tells her story to Suzanne Bearne.

I first started to experience mood swings when I was just eight years old. I just put it down to normal growing pains. But since the age of 16, there’s only been a handful of days every month when I’ve felt calm and at peace. The rest were a rollercoaster of emotions. By my mid-twenties the low moods became so severe that I’d self-harm and feel suicidal.

On a few of the darkest periods I tried to kill myself. I’d feel highly anxious; there was a lot of crying and hiding away in a room.

I still had to go to work and so I’d put all my effort into managing how I was feeling but when I came home, I’d be a wreck.

Some days I’d be really nasty and an unpleasant person to be around. I’d fly off the handle at everything. I’d become violent and take my frustration out on the crockery and objects would go flying. Most days I’d feel fatigued and have headaches, brain fog and find it difficult to go to sleep.

It was so extreme: one minute I’d feel normal, the next I’d be screaming and shouting then go cry in a corner of a room for seven hours. I just couldn’t control what was happening. It was like I was possessed.

There were only two or three days a month when I felt normal.

I managed to hide my disorder for many years. My friends and family always thought I was hot-headed and argumentative, but I was very good at putting on a mask and hiding everything. It was only once I felt safe behind my front door did everything spill out.

I kept people at a distance and never showed how I was hurting or struggling. When hiding my symptoms I could be quite manic and was a bit like ‘Fun Bobby’ from Friends! But inside I was screaming for help.

At age 30, Alice finally had a full hysterectomy and ovaries removed to cure her PMDD. While it was an instant relief, it means she can never have her own children
Because of this, I often chose the wrong partners for me because I knew they wouldn’t stay around for long so I wouldn’t have to let them in. Having said that, I would become emotionally attached very easily and let myself get hurt. It was a form of self-harm in itself.

It was only when I met my now-wife Sarah that she saw that there was something hidden beneath and she knew I needed help. She became my emotional punchbag. Where I had kept everything so hidden and bottled up, it would come pouring out at her.

We were friends before getting into a relationship, which was unusual for me, but I think that’s why we ended up working out, because trusted her and let her in.

I was 26 when I finally realised there was a pattern between how I was feeling and my menstrual cycle, after I tracked my cycle for a family planning study for a nursing colleague.

After recognising the symptoms as abnormal I took the results to my GP who took the time to really listen to me.

He diagnosed me with PMDD [Premenstrual Dysphoric Disorder], a cyclic hormone-based mood disorder and extreme form of PMS affecting around 1 in 20 women and AFAB (assigned females at birth) people and prescribed antidepressants and put me on the pill.

Although they helped, the symptoms were still very much present. The next step was to induce a chemical menopause but that didn’t stop the symptoms as the injections wear off. With the removal of the entire reproductive system the only way to currently cure PMDD, ultimately the last resort was to have a hysterectomy and remove my ovaries.

I was 30 when I underwent the procedure. It was devastating. I’d grown up always wanting to be a mother; it was part of my decision to be a midwife.

Motherhood meant so much to me. It was an agonising decision but PMDD is genetic and I appreciate some women might not feel the same way but personally I couldn’t risk passing it down to a daughter or granddaughter. I couldn’t live with myself just for the sake of experiencing motherhood. So, I made the painful choice to end that dream. I knew if I didn’t I would either end up sectioned or killing myself. it was a life or death decision.

PMDD took a lot from me but I believe being a woman means so much more than being a mother. It’s taken long time to say that and honestly believe it.

The day after the surgery I felt a major shift in me. It sounds like a cliché but it felt like a weight had been lifted off my shoulders. I felt light and clear headed. It was as though I’d taken a splinter out.

My life has changed significantly since the surgery. I knew I couldn’t continue to practise clinical midwifery. Not being able to have a child haunted me and it didn’t feel like the right fit anymore.

Instead I pursued a Masters in education practice which I’m due to finish next year. I also decided to use my midwifery experience and skills to make a difference to others with the same condition and so I set up PMDD & Me, a Community Interest Company working to empower women and AFAB people in becoming their own menstrual health advocate through educational events for sufferers and professionals alike.

In April we held the first dedicated PMDD conference in the UK for those affected by the condition. The response was amazing – I received so many messages afterwards from people saying I’d helped them take control of their menstrual health.

We’re running an even bigger conference in Winchester this April. My wife, Sarah, is writing a book about surviving PMDD from a partner’s perspective and we plan to take PMDD & Me on tour around the world and organise grassroots projects.

For now my wife and I have decided not to have children. PMDD & Me is my baby and our Dobermann Professor Dobby keeps us very busy.

PMDD took a lot from me but I believe being a woman means so much more than being a mother. It’s taken long time to say that and honestly believe it.

WHAT IS PMDD?

PMDD is a cyclical mood disorder that directly relates to normal hormonal changes within your menstrual cycle. It is often described as severe PMS but this does not give justice to the severity of how your quality of life can be affected.

Up to 40% of women experience some form of physical and emotional symptoms linked to the rising and falling of normal hormones (Oestrogen and Progesterone), but in 2-8% of women these symptoms are severe enough to disrupt their daily life, work or school, and interpersonal relationships. Symptoms of PMDD vary for each woman but can include:

Physical
Sleep disruption
Headaches
Memory and concentration difficulties
Breast tenderness or swelling
Muscle and joint stiffness
Bloating and irritable bowel
Increase or decrease in appetite
Fatigue
Acne
Increase or decrease in libido
Emotional and behavioural
Mood swings that may be extreme and volatile
Irritability
Anger or rage
Depression, tearful, easily distressed
Feelings of being constantly on edge
Heightened anxiety
Suicidal and/or self-harming thoughts and actions
Binge eating
Feeling overwhelmed
Difficulty in concentration and focusing
Social anxiety, isolation or avoidance

PMDD is a long-term condition that can affect women and those assigned female at birth from the onset of puberty until the menopause. It is an illness that often worsens over time or may start spontaneously after a traumatic event or after a hormonal disruption such as pregnancy. It is important to know that PMDD is not caused by a hormone imbalance, but rather how the body and brain responds to the normal fluctuations of female sex hormones.

The severity of the ebb and flow of symptoms can cause lasting damage to a woman’s life. It is common for PMDD to be misunderstood by friends, families and partners with many affected women socially isolating themselves and withdrawing from relationships. PMDD sufferers have unique needs and providing them with high quality support and information is fundamental to them being able to manage their condition.

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