Lydia Brain / Courtesy of Lydia Brain

'If issues with women’s vaginas and periods were taken more seriously, I could have been diagnosed sooner'

Lydia Brain thought her exceptionally heavy periods were an unlucky fact of life and put up with them for years.

But now she says she wishes she had sought medical help sooner, as the problem turned out to be caused by a rare form of womb cancer.

The 24-year-old said that before she began treatment her periods would last up to 10 days, with extremely heavy bleeding for around five to seven days.

“At one point I’d be getting through the largest size tampons and a night-time sanitary towel in about an hour,” she told The Independent.

“They were very heavy for several years, and it hadn’t always been like that. They got worse and worse and after a while I realised they were abnormal.”

“It was quite debilitating at the time,” she said. “I would have to make plans around them and cancel trips."

Ms Brain was eventually diagnosed with a cancer of the uterus, called inflammatory myofibroblastoma, which is so rare that she is only the 11th person ever to have suffered from it.

It is a form of womb cancer, which is the fourth most common cancer in women in the UK – more common than both ovarian and cervical cancer. Around 9,000 women are diagnosed with womb cancer each year.

Irish teenager breaks European cancer treatment fundraising record

Embarrassment and a feeling that heavy periods were “something that happen to some women” stopped Ms Brain her from visiting a doctor about the problem straight away, she wrote in a blog post.

She said she had an unrelated ultrasound scan three years ago to check she didn’t have polycystic ovaries because she was taking medication for acne.

“That was before I’d gone to the doctor for bleeding, or heavy periods, or anything really. By chance they found a lump in my womb, which they thought was a fibroid – they’re small, and common, lots of women have them.”

Assuming her symptoms were partly caused by the lump, which she believed to be benign, Ms Brain, who lives in Manchester, continued her daily life and hobbies, including pole dancing.

However, her heavy periods continued to interfere with her life, including one “horrifying” occasion, described in her blog, when she stood in the passport queue at Stansted airport for 40 minutes with blood running down her legs.

“Covered with a long coat and the most intense fear and mortifying embarrassment, silently queueing and not making a fuss,” she wrote.

“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.”

When she eventually visited a doctor about the problem a week and a half later, she was told that scans were not offered for one-off events. 

“At the time I felt a sense that heavy periods and abnormal bleeding were just accepted as something that happened to some women, sometimes,” she said.

“Even after mustering all of the words I could find to explain how abnormal it was to a male doctor; it was still put down as an odd period, probably stress induced.”

Eventually, following hospital scans and weeks of tests on the fibroids, during which doctors in America and Ireland were consulted, it was discovered that tumours had embedded the wall and lining of her womb, causing her heavy bleeding each month.

Doctors removed one of the tumours and have have now induced the menopause in Ms Brain in an attempt to starve the cancer of the hormone oestrogen and help her recover.

Ms Brain, who is working with two charities looking into gynaecological cancer research and awareness called Grace and Eve Appeal, said she wanted to raise awareness of the symptoms of womb cancer and remove stigma around talking about periods.

“If I had been more prepared to openly discuss my symptoms and if issues with women’s vaginas and periods were taken more seriously, I could have been diagnosed sooner and the outlook for my treatment and fertility would be brighter.”

Comments