Graduate ashamed to get help for heavy periods has cancer

A young graduate too embarrassed to tackle the problem of her heavy periods was inadvertently ignoring the signs of a rare type of cancer. 

Lydia Brain, now 24, is only the 11th person in the world to be diagnosed with inflammatory myofibroblastoma. 

Lydia put up with the disruptive symptoms for three years, before eventually visiting the doctor.

One period was so bad, blood dripped down her leg for 40 minutes, while she waited in an airport queue. 

Now she’s been put in an induced menopause and may need a hysterectomy, ruining her hopes of having children. 

Lydia Brain ignored her heavy periods for three years and is now urging other women to seek help sooner

The University of Manchester graduate said: ‘It was definitely not healthy. I stood there, in the passport queue at Stansted, after bleeding down to my knees on a flight, for 40 minutes.

‘Covered with a long coat and the most intense fear and mortifying embarrassment, silently queuing and not making a fuss, I was too embarrassed to tell a male member of staff I needed to get through the queue immediately and go to the toilet, or better yet to a hospital.’

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Finally, in January 2016, she did visit her GP, triggering a series of tests and examinations which led to a diagnosis of uterine tumours.

Now, in a bid to destigmatise women’s cancers, she is sharing her story to encourage them to seek medical help sooner.

Lydia, who lives in Manchester but is originally from Herefordshire, said: ‘Before my diagnosis, I suffered with heavy periods for what seemed like years, just putting up with them silently, not going to a doctor.

The 24-year-old is only the 11th woman in the world to be diagnosed with inflammatory myofibroblastoma

‘If we lived in the beautiful, open, free world which I hope we will one day, where women are equal and their bodies are talked about, then perhaps I’d have been diagnosed sooner.

‘I felt in a sense that heavy periods and abnormal bleeding were just accepted as something that happened to some women, sometimes.’

Following her initial appointment with the GP, Lydia was correctly diagnosed with anaemia – low iron content in her blood – caused by her heavy periods.

Medics confirmed this was caused by fibroids in her uterus and she was put on the waiting list for surgery.

However, the pole-dancing fanatic’s menstrual problems were also symptomatic of a greater problem – a rare cancer of the uterus called inflammatory myofibroblastoma. 

Now, in a bid to slow the progress of the cancer, Lydia has been put in an induced menopause.

Lydia has been put on medication that brings on an induced menopause at just 24 years old

‘I’ve been down, depressed and tired,’ she said. ‘It’s not what I expected at 24.’

If a patient takes the medication for too long it can also have an adverse impact on bone density and could cause osteoarthritis.

Ultimately, doctors have advised her to undergo a partial hysterectomy – devastating for a woman in her early 20s.

LYDIA’S TREATMENT 

Lydia’s heavy periods were caused by tumours embedded in the wall and lining of her womb.

After weeks of tests, involving medics and scientists across the world, she was diagnosed with inflammatory myofibroblastoma. 

Like some prostrate and breast cancers, her tumours are fueled by the hormone oestrogen.

Cutting off its supply offers the best chance of survival.

Lydia has been put on a monthly dose of an injection called Zoladex to stop her producing oestrogen, which has induced a menopausal state.

But side effects of the drug can include lower bone density and osteoarthritis.

Doctors have recommended a partial hysterectomy. 

‘It’s a blow,’ said Lydia, who studied cognitive neuroscience and psychology at university and currently works as a researcher.

She faces a race against time if she wants to have children naturally. 

‘I think I would like children, but I didn’t want them yet.

‘But I could only have three or so years on the injections before having a hysterectomy.

‘I might have to have children alone or adopt.’

She could freeze her eggs, but her womb looks likely to be removed.

Lydia told how in the three years before her diagnosis, she endured very heavy periods and occasionally bled between cycles.

Too young for a smear test – the age they are given in the UK is 25 – it would have not detected the cancer, anyway as it was in her womb, not her cervix.

Now she is keen to encourage people to talk about periods and is a champion for the young adults charity Trekstock.

‘More than a quarter of young women don’t attend a smear test due to embarrassment, this has to change,’ she said.

‘Let’s start talking about it more.

‘Be bold. Let’s make sure the next generation of boys don’t wince and laugh at the word ‘period’, let’s make sure women are more familiar with the symptoms of gynae cancer, let’s make sure women are heard and end the stigma.’ 

WHEN SHOULD YOU BE CONCERNED ABOUT HEAVY PERIODS?

Some women lose an excessive amount of blood during their period.

The medical term for heavy periods is ‘menorrhagia’. It can sometimes happen along with other symptoms too, such as period pain. 

Conditions that can cause heavy bleeding include polycystic ovary syndrome (PCOS), pelvic inflammatory disease (PID), fibroids, adenomyosis and cancer of the womb (although this is relatively rare). 

A good indication that your blood loss is excessive is if you’re using an unusually high number of tampons or pads, you experience heavy bleeding through to your clothes or bedding or you need to use tampons and towels together.

Source: NHS Choices