'I had a hysterectomy after periods made me suicidal'

'I had a hysterectomy after periods made me suicidal'
From BBC - March 8, 2018

For a couple of weeks every month, Lucie seemed to become a different person - one suffering from countless mental and physical problems - and she could not understand why. She spent years looking for a doctor who could provide an answer, and it took a hysterectomy at the age of 28 to cure her.

"I would know that things would change before I even opened my eyes in the morning. It was just like this weight had been put on me," says Lucie. "I did go to the doctor at one point and tell them that I thought I was possessed."

Before puberty hit, Lucie had been a calm, happy, carefree child. But from the age of 13 she started to suffer from severe depression, anxiety and panic attacks.

She also began to self-harm, and experienced extreme mood swings. So at 14, she was pulled out of her mainstream school and sent to live in an adolescent mental health unit.

"I had a diagnosis of post-traumatic stress disorder and Obsessive Compulsive Disorder (OCD), and they mentioned bipolar quite a lot," she recalls.

But none of these seemed to fit the cyclical nature of her symptoms.

Things changed dramatically when she became pregnant at 16 with her son, Toby.

"Within a few months of being pregnant I left the hospital. My symptoms just seemed to disappear. I was happy. I felt really good. I felt mentally really, really well, which was a surprise."

This lasted throughout her pregnancy and her time breastfeeding - but when her periods came back, so did her symptoms.

A few years later, Lucie, from Devon, went back to college to study for A levels, but every few weeks she would feel unable to cope with the pressure, and eventually she quit.

Then she embarked on a National Vocational Qualification (NVQ) to become a teaching assistant. This time she struggled through to the final stretch, stopping only two months before the end, when her symptoms became unbearable.

But at 23 Lucie became pregnant again - with her daughter Bella. And again she felt mentally well, despite having to spend months in hospital with severe vomiting.

After Bella was born, however, the symptoms she had been struggling with for years became even worse.

Some were physical - joint and muscle pain, hypersensitivity to sounds, smell and touch, and extreme fatigue. Others were mental - invasive thoughts, irrational behaviour, forgetfulness, and overwhelming feelings of hopelessness.

"The scariest thing for me was depersonalisation, where I would feel like I was completely disconnected from my body, and like I was in a dream. At points I would find that I did not recognise the people that were around me. I knew that I should know them, but their faces just did not make any sense to me," she remembers.

"And at one point, when things were really really bad, I could hear my voice as someone else's, so when I was talking, I could not recognise my own voice or my own reflection."

She frequently suffered from suicidal thoughts, which led her to take enormous risks, almost willing her own death.

All these things occurred at monthly intervals, but it was not until her husband, Martin, offhandedly mentioned that he should keep quiet before her period, so as not to annoy her, that Lucie began to study the connection between her periods and her symptoms.

"It became pretty clear what was going on," she says. "Within hours of bleeding, I would be fine. I would go from one extreme to the other. I would know that my period was coming and though I suffered from really, really heavy, awful periods, I felt at my best when I was bleeding. I even very carefully planned my wedding day so I would be bleeding because I knew that it was the only time I felt OK."

Up to this point, Lucie had always assumed that her hormones exacerbated the mental health problems she had been diagnosed with. Now she began to wonder if they could be the cause.

Armed with a list of about 30 symptoms and information she had printed off the internet, Lucie went to speak to her GP. At the time, she was consistently being told that she was suffering from post-natal depression after the birth of her daughter, but having suffered from depression in the past, Lucie strongly believed this was not the case.

She had been medicated with anti-depressants, anti-anxiety medications and sleeping pills since she was a teenager. And now anti-psychotics were added to the mix.

"Every time I went, they would up something or add something. I was on a very hefty dose of anti-depressants. And I would say to them, 'I am not depressed this is not depression, something else is happening.' I felt like I was losing my mind completely."

Her GP sent her to see a mental health team, who told her that although some of her symptoms were affecting her mental health, she had a physical condition that could not be treated by a psychiatrist. But when Lucie asked her GP if she could see a gynaecologist, he scoffed at the idea and sent her back to the mental health team.

This time they gave Lucie's condition a name: Premenstrual dysphoric disorder (PMDD) - a severe form of Premenstrual syndrome (PMS). They wrote to the GP recommending that she be seen by a gynaecologist, and "think about medication to prevent ovulation permanently".

This seemed like a possible breakthrough to Lucie, but her GP disagreed with the diagnosis - and insisted that she try every possible alternative treatment before he would refer her.

What is PMDD?

Source: Nick Panay and Anna Fenton

She was put on various birth control pills, which made her feel constantly ill, and once the dosage limit was reached for one anti-depressant, another one was added on top.

She was prescribed Mirtazapine, Sertraline, Prozac, Diazepam and sleeping tablets, all of which made her feel numb, and made it harder for her to argue her case.

"It was very difficult. I was at my worst, I could not go to the doctors, could not even string a sentence together. I could not hold a conversation. And then when I was well, I could not even remember what I had been like, the weeks prior to that would just be a blur."

It was Lucie's husband, Martin, who ensured that she kept going back to see her doctor, and trying other GPs, in the hope of finding one that would listen to her. Eventually, she met one who recognised that none of her treatments had worked, and at long last referred her to a gynaecologist.

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