'It was as if someone else had moved into my body and hijacked my mind.'

As I carefully laid Cody down in his cot, I listened to his gentle breathing, watched the movement of his chest move up and down, as he dropped off to sleep. Five months old. Rosebud lips, plump little fists clenched firmly in sleep. My boy – he was gorgeous.

Closing the door with the utmost care, I realised I was exhausted. Slumping down on the sofa, I thought I’d allow myself a little shut-eye myself. Drifting off, I suddenly came to with a jolt: ‘What is that?’ I gasped

Before me, was a creature, like a mermaid, but with huge claws, so close to my face. Rooted to the spot, my heart hammered. ‘It’s not real, not real,’ I muttered to myself.

After what seemed like an eternity, the vision dissolved, I was shaking, covered in sweat. I breathed deeply to bring myself back to normality. 

These apparitions were part of my life as a new mum. Cody was my third child. I had experienced this kind of psychosis after childbirth before. People in gas masks coming towards me. Animals materialising in the sky or on the curtain rail in my bedroom. 

I’d smell things that weren’t there. Quite suddenly I would smell urine or even strong perfume and even have the taste in my mouth afterwards. Many women suffer from post-natal depression, but for me it wasn’t quite that simple.

Depression and ill health had dogged me throughout my adult life. And doctors had never been able to explain why.

Feelings of sadness, hopelessness and a loss of interest in life, combined with a sense of reduced emotional well-being Full medical glossary
A severe mental disorder in which the person affected loses contact with reality. Full medical glossary
unhappy girl

What caused my depression?

Sometimes depression can be traced to early trauma or poor parenting. But I’d had happy childhood with an abundance of love. By the time I reached puberty, happiness gradually started to leave me; my struggle with depression had begun. It was as if someone else had moved into my body and hijacked my mind.

When I was 14, I started my periods. The pain left me hunched over and unable to straighten. I’d vomit violently because of the pain and often be sent home.

My mood problems worsened and I left home aged 16. I started to experience my first feelings of paranoia, impending doom and suicidal feelings. I was prescribed antidepressants. One day the feelings of desolation got so bad, I picked up the bottle of pills, emptied the tablets out, crushed some of them up and placed them on my tongue washing them down with wine. I woke up in hospital. My landlord had found me.  A nurse was holding me down while she fed a pipe down my throat. I had to stay on the psychiatry ward for a few weeks..

I tried to get my life together. I started a career as a nurse. But mood problems and other symptoms like extreme lower-back pain and severe restless legs still dogged me. I’d tell doctors these were menstrual-related, but they were sceptical. They told me I had a personality disorder, or perhaps bipolar. Self-medicating with booze and drugs was my answer.  Things were spiralling out of control. Sometimes I would be on the phone to the Samaritans long into the night, just desperate for help, and sometimes I would wonder where else there was left for me to turn as my situation grew more and more hopeless.

Feelings of sadness, hopelessness and a loss of interest in life, combined with a sense of reduced emotional well-being Full medical glossary
An umbrella term for a variety of problem personalities in which those affected have difficulty relating to other people and to themselves. Full medical glossary
A physical injury or emotionally painful event. Full medical glossary

The menstrual connection

During the early nineties fate intervened, and I was offered a new job and a career in Spain as a travel consultant. I wondered if the stress of nursing was to blame for my worsening condition.  By the time I left the UK, I had been mentally ill for some seven years, and I was just 22 years old.

Things did start to improve a bit for me. I still suffered from depression, but I loved the sunshine and the work. I met someone, James, and it was serious. In 1997, I became pregnant. Although I suffered dreadful morning sickness and James’s party lifestyle caused rows as my nesting instinct kicked in, I was depression-free.

I felt sure that my illness had righted itself and those days were behind me. However, the birth of the baby hit me like a truck. Billy had terrible colic and I was utterly exhausted and filled with anxiety. When I stopped breastfeeding, I suffered a serious relapse. Mood swings. Feeling murderous. In desperation I called the postnatal depression helpline. ‘Love,’ the counsellor told me gently. ‘Your period is obviously coming on. The feelings are hormonal.’ 

A severe spasmodic pain that occurs in waves of increasing intensity. Full medical glossary
Feelings of sadness, hopelessness and a loss of interest in life, combined with a sense of reduced emotional well-being Full medical glossary
One of the three main food constituents (with carbohydrate and protein), and the main form in which energy is stored in the body. Full medical glossary
A return or worsening of the symptoms of a disease after a period of remission. Full medical glossary
Relating to injury or concern. Full medical glossary

As soon as I started to ovulate, the mad women would move in and take over my life: delusions, paranoia, nightmares, day mares and an exhausting list of symptoms so severe, that they had a disastrous effect on my personality. My physical health was also appalling with endless infections and compromised immunity. I’d suffer vertigo with terrible shaking attacks and episodes of stumbling. I was so low. ‘You’ve lost your smile,’ a friend told me sadly.

Perhaps unsurprisingly, James and I split up. I was devastated and returned back to the UK. 

After a while, I thought I might start dating again. I knew getting pregnant would be a terrible idea, so I decided to sort out some contraception. The doctor suggested the contraceptive injection. It was a catastrophic decision.Within a few hours of receiving it, my mental chatter had increased tenfold and I developed a huge knot in my stomach and felt dreadfully insecure. I started wailing and crying while lying on my bed, trying to pull myself together.

A means of preventing pregnancy. Full medical glossary
A term used to describe something that prevents pregnancy. Full medical glossary
Invasion by organisms that may be harmful, for example bacteria or parasites. Full medical glossary
the organ or the body where food is stored and broken down Full medical glossary
A feeling that one or one's surroundings are spinning. It is caused by a disturbance of the semicircular canals in the inner ear or the nerve tracts leading from them. Full medical glossary

Symptoms only there two weeks in a month

My mental state grew more serious and I became physically unwell. I had numerous infections, suffered extreme lower-back pain, and developed acne on my back and pains in my joints. The doctors were convinced that all of my problems were in my mind, a manifestation of the depression and anxiety. However, my symptoms were only there two weeks in a month, and were always followed by a menstrual period. They were a kind of prelude to my periods, which were once again causing me to feel faint and to sometimes vomit.

The doctor prescribed natural progesterone, which was known to help with pre-menstrual syndrome, and I prayed it would work. Within a few minutes of using the progesterone, calm came over me and I immediately felt better. I couldn’t believe it had happened so quickly. I wondered if I was imagining it, as it was so instantaneous. Despite the initial reprieve that progesterone had provided, and the antidepressant medication I was using, I was still extremely poorly. 

Billy was four years old and I was 30, and I had been ill almost 16 years, which was more than half my life. 

Inflammation of the oil-producing glands of the skin, leading to spots that may be pus-filled on the face and sometimes the upper body. It classically affects adolescents although it can occur at any age. Full medical glossary
Feelings of sadness, hopelessness and a loss of interest in life, combined with a sense of reduced emotional well-being Full medical glossary
Invasion by organisms that may be harmful, for example bacteria or parasites. Full medical glossary

James and I reconciled briefly and in 2003, I fell pregnant again. The pregnancy went smoothly – no depression. Freddie was born and I was delighted. Then at six weeks, I woke to feed him. As soon as I opened my eyes, I knew that something had gone dreadfully wrong, and for a moment I lay still, surveying my situation.

My body seemed to lock into position as if being held in a vice. My neck was so stiff I wondered if I had suffered whiplash, I stumbled as I tried to get up. The doctor diagnosed mastitis, but it was more than that. The slightest touch would leave me wincing, and the tiniest noise would go right through me. Every time the baby cried or Billy spoke to me, it seemed as if the sound was magnified, and I covered my ears, trying to protect myself from what was almost a physical pain. I felt so acutely on edge.

Days later, a loud chugging noise in my ears deafened me … What could it be? I decided there had to be a tractor in my bedroom. I felt my body was being held down. There were other bizarre symptoms. I realised I was hallucinating and got myself down to the mental health clinic. The duty psychiatrist immediately diagnosed postnatal depression.

Has a sudden onset. Full medical glossary
Feelings of sadness, hopelessness and a loss of interest in life, combined with a sense of reduced emotional well-being Full medical glossary
Infection of the breast tissue, most often affecting breastfeeding women Full medical glossary
In physics it is the tendency of a force to twist or rotate another object Full medical glossary
the period from conception to birth Full medical glossary
A specialist in the management of mental health conditions. Full medical glossary
An injury to the soft tissues of the neck, classically arising from a car accident Full medical glossary
depressed mum

No symptoms during pregnancy

Recovery was slow. By the time little Freddie was 2, I was still sick. In fact by then I had been poorly over half of my life and I wondered if I would ever be taken seriously again. The slightest task (counting money, for example) would leave me completely perplexed and confused. This brain fog heightened my irritability. I’d scream out with the sheer frustration of my never-ending symptoms. When my period came, I’d be okay again and the normal me would return almost as if it hadn’t happened. I knew immediately when the cycle would start as I would become so sensitive to sound, different noises would trigger me so badly and were almost painful.

In the spring of 2005, I turned a considerable corner and was using anti-depressants and progesterone therapy. I met an old friend Den and we went out for a date. Although I was guarded, he was so supportive. We ended up falling for each other. My menstrual cycle continued to dominate our lives – I once smashed up the bathroom. I was absolutely horrified by my behaviour which worsened more and more each month. But we yearned for a child together.  In 2008, we got married and in March 2010 our darling little Cody was born.

During my pregnancy, there had continued to be an absence of symptoms. This in itself was staggering to me, and I felt better than I had done in many years. 

The monthly sequence by which a woman’s body prepares for potential fertilisation of an egg released from the ovaries, involving thickening of the uterus lining and then shedding of the lining when pregnancy does not occur. Full medical glossary
the period from conception to birth Full medical glossary

By the time Cody was six months old, my periods had returned and my symptoms were back with a vengeance – that’s when I found myself confronted with the mutant mermaid.

At this point, I read in a newspaper about a specialist doctor in London that had done new and vital research into premenstrual syndrome and the more severe type, premenstrual dysphoric disorder along with postnatal depression, what is medically known as reproductive depression. Professor John Studd had retired from medical practice but he had colleagues that would be able to help me whom he had trained personally.  

When I told the doctor my story from beginning to end, he immediately understood. He was the first doctor I had seen that requested a blood test to look at my hormonal profile. He was also the first doctor in some 30 years that knew all about reproductive depression.

My psychiatrist’s insistence that I was bipolar was all the more frustrating, and he still couldn’t then explain why I was only ‘bipolar’ for two weeks of the month. Once I had found the correct doctors however, I was so relieved to know that help was available and I could be treated.

A fluid that transports oxygen and other substances through the body, made up of blood cells suspended in a liquid. Full medical glossary
Feelings of sadness, hopelessness and a loss of interest in life, combined with a sense of reduced emotional well-being Full medical glossary
The combination of physical and emotional symptoms that occur in many women in the week or so before menstruation. Full medical glossary
A specialist in the management of mental health conditions. Full medical glossary

Medical intervention needed for premenstrual dysphoric disorder

Within a month or so the blood tests had revealed a great deal, more than I had anticipated. I had always thought that the genetic fault lay in my progesterone levels, but the test results were saying that my oestrogen levels were also undetectable in my bloodstream. This was a revelation to us all and gave new insight into how and why my body was simply unable to function properly. In short, I had a colossal problem which would never have got better without medical intervention.

Using anti-depressants and a mood stabiliser was helping but it was as if my body was a car that was driving without the petrol. My body was reaching a state of crisis every month and this was having a catastrophic effect on both my immunity and my mental health. The blood test revealed I was also low in Folate and iron which meant I was also anaemic, the result of that was my dizziness and vertigo.  The hormonal sensitivity which is now known as premenstrual dysphoric disorder.

A fluid that transports oxygen and other substances through the body, made up of blood cells suspended in a liquid. Full medical glossary
The basic unit of genetic material carried on chromosomes. Full medical glossary
Relating to the genes, the basic units of genetic material. Full medical glossary
An element present in haemoglobin in the red cells. Full medical glossary
A hormone involved in female sexual development, produced by the ovaries. Full medical glossary
A feeling that one or one's surroundings are spinning. It is caused by a disturbance of the semicircular canals in the inner ear or the nerve tracts leading from them. Full medical glossary

I was prescribed an oestrogen patch along with the progesterone. The patches allowed my body to receive the necessary hormones in a controlled and steady dose, rather than the fluctuations that were causing my body to react in such a critical way. Within a month or so, the patches had breathed some life back into me and I felt much improved. I was more in control of my own thoughts and I had a whole month without suffering. My joint flare-ups also settled down, and the lower-back pain I had experienced since I was a teenager simply left me. However, I had been down this road before, and as much as I wanted this new intervention to work, I didn’t want to be lulled into a false sense of security. I remained guarded and was forever waiting for a relapse. I was warned that as I was often suicidal, I would probably need a hysterectomy and my ovaries removing to turn the whole system off completely. 

This would create a ‘blank canvas’ that would see me rely on natural hormonal therapy rather than my own hormones, which I clearly couldn’t metabolise correctly. It seemed that the illness had become so entrenched it could still only be ‘managed’, and I wasn’t cured in the conventional sense. I would have to continue to take things day by day, or rather month by month. This was my life now and I had to accept that it was a long term strategy rather than an instantaneous cure.

Term to describe an episode when the symptoms of a condition worsen. Full medical glossary
Term to describe episodes when the symptoms of a condition worsen. Full medical glossary
A viral infection affecting the respiratory system. Full medical glossary
A substance produced by a gland in one part of the body and carried by the blood to the organs or tissues where it has an effect. Full medical glossary
The surgical removal of the uterus (womb). Full medical glossary
To break down or process substances in the body. Full medical glossary
A hormone involved in female sexual development, produced by the ovaries. Full medical glossary
Female reproductive organs situated one on either side of the uterus (womb). They produce egg cells (ova) and hormones in a monthly cycle. Full medical glossary
A return or worsening of the symptoms of a disease after a period of remission. Full medical glossary

A life without premenstrual dysphoric disorder

I had been using oestrogen therapy for many months along with progesterone, when I had a sudden relapse in the spring of 2012. ‘I want to kill myself,’ I sobbed to Den. ‘I’m not to be trusted.’ We both knew that the time had come for the hysterectomy. On 29 November 2012 I received a full hysterectomy and oophorectomy (removal of ovaries), which was all done by keyhole surgery. When I woke up I couldn’t have felt more relieved. 

It’s a big operation and it took six months before I was fully recovered. 

But mentally, thanks to the hysterectomy and hormone replacement therapy, I felt wonderful.

I suddenly noticed how beautiful everything was. The sky was so big and everything looked so crisp, particularly the trees swaying gracefully in the breeze. I had never really noticed them before My mind was able to ‘look’ rather than being lost to it all. I simply didn’t have any of the negative and spiteful thoughts that had so damaged me in the past. I started to absorb just how sick I had been. I’d had no idea how bad I’d been until I experienced a life without symptoms. My condition is monitored by Mr Mike Savvas at London PMS & Menopause Centre, and I’m so grateful.

While I worry that there might be a relapse one day, I can’t ignore the fact that I am still well. I don’t suffer from any recurring ailments and I have a renewed energy, which has allowed me to campaign and write my book. I am able to enjoy my children without the constant onslaught of depression and the endless cycle of despair. I am a better wife, a better mother and I have become passionate about raising awareness of the hormonal elements to this mood disorder. I am also fully aware that my recovery is all dependent on the amazing scientists, doctors and healthcare professionals researching this condition. 

Without their professionalism and expertise, I really don’t think I would be here.

To find out more about Caroline’s experiences and reproductive depression, read  I Blame The Hormones: A raw and honest account of one woman’s fight against depression (HarperTrue Life – A Short Read) 

 

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Feelings of sadness, hopelessness and a loss of interest in life, combined with a sense of reduced emotional well-being Full medical glossary
A substance produced by a gland in one part of the body and carried by the blood to the organs or tissues where it has an effect. Full medical glossary
The surgical removal of the uterus (womb). Full medical glossary
A type of minimally invasive surgery. Full medical glossary
multiple sclerosis Full medical glossary
A hormone involved in female sexual development, produced by the ovaries. Full medical glossary
Female reproductive organs situated one on either side of the uterus (womb). They produce egg cells (ova) and hormones in a monthly cycle. Full medical glossary
the period from conception to birth Full medical glossary
A return or worsening of the symptoms of a disease after a period of remission. Full medical glossary
Abnormally swollen. Full medical glossary
A vein that is swollen, distended and twisted, usually due to weakness of its valves. Full medical glossary
A blood vessel that carries blood towards the heart. Full medical glossary